
Many of us, myself included, come from a dysfunctional family which adds a lot of weight to the challenges of caregiving. I have read stores on various threads on other topics and decided it would be good to have a thread just for this topic for people to share, vent and discuss.
The idea for this thread originated on the thread named "The Caregiver....How are YOU doing today?"
((((HUGS))))..
Twsis is playing her game with you. I know that maddening calmness - my sis does it too. She has a counselling diploma. Sounds like your attorney is on the ball, thankfully.
Breathe deep, try to get some good sleep tonight. You are in my prayers too. Hopefully this is coming to an end. (((((((((Hugs)))))))
I just feel like I am against a rock and a hard place because everything I do produces no results from him. It just seems that it has to be all about him, what he wants, what gives him pleasure, who he wants to socialize with, his family, his traditions...my point is....where do "WE" come into the picture? There is no "WE".
Tomorrow after hearing I am planning to drive to see J. The medical staff at the hospital is surprised he is still ticking away, breathing strongly, yet brain swelling liver failing kidneys failing and septic. Maybe he is waiting for me? I am scared and would have gone sooner without the hearing coming up. But had too much to do to get ready for that.
I have been reading about passive/aggressive personalities. Simply because I am at my wits end. The old saying, "You can't teach old dogs new tricks," is such an easy out for people who have it ingrained on their brain to never change. "Everyone else is wrong if they don't do things the way I do." Of course that is only a small part of it as passive/aggressive is not only a learned behavior...it is also inherent.
I am far from perfect, I have my issues...but I do not nag, do not pressure...but when you are very clear...giving a beginning and an ending with this in the middle or that in middle and it is still blown off, forgotten, not paid attention to....limited info given back...the out come is still all about self...no room to include another's wants or desires....how do you not explode into a rage which only produces temporary resutls...then it starts all over again.
I am rambling I know...but am trying to wear down my rage in a postive (if possible way)...I already exploded. The lack of communication with limited info and the response back...is like being gaslighted....I just don't know if I can do this any more.
Me - vent away of it helps. gpa seem to go off like a yoyo - up and down, back and forth. It would drive me nuts... Overthinking things is not supposed to be good. Not surprised you lose motivation when interrupted. That would drive me nuts too.
juju - a job that is great! Congratulations!
Alison - I have been thinking about your situation and it does look like your dad is worse than anyone thought. Can't swallow and they don't know why not, intestinal problems, so a feeding tube cannot be used, bladder stones along with his other bladder/urination issues. Has he had a neuropsychiatric evaluation? You say he is more alert since being in hospital and interacting with people there. It really makes me wonder if he needs to be in a facility with people around him and able to give him whatever specialized care he requires. His needs seem to be getting greater all the time. One thing about mother is that she feels more secure with nurses on the floor, right outside her bedroom. She has always been very independent, and happy to be alone, but the last couple of years wanted more and more attention because of her decline. I think she felt that some things were beyond her and needed and needs more security. It is understandable. Since your dad wants all measures to keep him alive to be used, he will need some professional care I would think. Do you feel you can provide that in his home with visiting nurses? I know your mum has been involved and am wondering if your bro has given any input. I am aware that you cannot act alone in this. Big (((((((hugs)))))) this is so hard, I am sure.
STOP TAKING ORDERS FROM OTHER PEOPLE!!!
God knows you have enough to do on the average day. And, like you, I am the kind of person who can't cope with being interrupted - I never get the job done, and I hate it.
This is where the To Do list comes in so handy. Plot your day, hour by hour. Stick to your schedule like glue. Thus, rather than Dad rings you, you ring Dad and you tell *him* what time you plan on being at his house, and therefore what time he might like to ask his neighbour to call round.
It's a control issue. At the moment everyone is pulling you in all directions, and it's working for nobody - not just you, but them too. It's a crazy waste of your time that, to boot, ends up with you feeling dreadful. So YOU need to take control of it, and believe me nobody can stop you. What are they going to do, come and sling you over their shoulder in a fireman's lift and cart you off somewhere?
So map out your day. You're not saying no to anyone, you're saying when. And God knows it's about time.
Bless you, it's so hard to think straight when you're being buffeted about as you are.
Lectured about everything again, yes I know I have a few things to put back up at grandpas house that I did put off,Im wrong. But my sister is once again supposedly coming home( been she is- then isnt etc we just never know) Well she will be in my room which is currently filled as a storage room of boxes and bags of papers, toys and clothes. This is because I havent had a chance to go through it, someone or me is always sick or needing me. It takes time of uninterrupted cleaning which will be a full 2days at least I kid you not ( incl dusting, moving my clothes and computer out , trying to push pin curtains to divide room ( my room leads to the backyard and laundry room so need to separate room with something so she has her privacy of sorts) 5 minutes or 30 minutes for some sounds logical.. but I am the type I go full force or forget it. Sad on my part yes. But Im running out of time, I cant take chances that her maybes or yes of coming home wont happen like I have.
His help left early and hes been calling me, about the faucets to check, a friend needed some work, etc I told him Ok I will call when plumbers are open tomorrow and friend is up to you its fine with me to have some help!! But Im not helping her clean his house!!! Its her deal for money not mine.
So I meant to put the stuff up last night but was tired and didnt want to drop it at his house( dishes) so I promised him I will do it tonight and guess who called as I was typing this? Grandpa! Goes like this:
Me:Hello?
Oh You sound busy, right?
Me:Yes Grandpa Im cleaning but if you need coffee or drink or help, Middle of making lunch.. Ill be down for...( he interrupted)
Your not going to stay long then? Just about 30 minutes at least?
Me:No Im sorry about a minute or two- I know you want company but I really have to get this done for sis in case I told you how my room..( he interrupts)
Well neighbor is here wanting help to do it, I guess not huh?
Me:No I will do it tonight I did half of it before ..I can....( he interrupts)
Yelled- No I got it .. just I got never-mind.. hung up on me
Well Back to my cleaning.. If I can get my mode to turn back on!!! I know it sounds crazy but I honestly I lose that feeling or motivation or whatever if I have to stop a million times. As if Red Light Green Light Games.. anyone remember that?
Oh add my son is going a mile a minute with some attitude but luckily not severe- son just left with my dad to drop of lunch- Son will run in and give it to him cuz dad and grandpa still not speaking. Grandpas choice. Ok well least Im never bored?
****Hope all of your Sunday is going well or at least calm. Have a nice meal or drink and relax. Ill read soon again
Had a nice chat with J's brother this morning. They thought J would pass last Thursday, but he is still hanging in there. Family, I think it is natural, wondering if they made the right decision. J is septic, kidneys and liver failing. He did seem to recognize his brother, brother thought, but not able to determine if he is understanding anything that is going on.
Congratulations concerning your job.
Much Love & Light! Margeaux
It must be very difficult for you since you said you are tempted to call J's dad.
I completely agree with Book about what she said regarding visitors when a person is possibly at the end of life. It is probably just too much to handle, added to the fact that he is in such a delicate condition. Just dealing with all particulars, as we well know here..... probably makes it all the more difficult to be dealing with extra people at that time. You have been very blessed to have had a good friend like J.
Your sisters are too much! They're only interested in gossip aren't they?
Your guardian sounds really considerate, and as if she is willing to go the extra mile for you. Have fun at this, what was it called "boo zoo?" Must be something for Halloween?
Your in my thoughts.
Much Love & Light! Margeaux
FYI, I'm glad that you pointed me to the right place last year when I was trying to find a hotel right in the middle of Waikiki. You had told me that where I was going to book my hotel was on the opposite end of where I wanted to be. Thanks for that tip. I did find a great hotel right there. Very close to the beach, the zoo, the International Market, and restaurants. FYI, the International Market is No More. It's going to be replaced by a high-end store.
Glad - When my mom was dying - within 2 weeks (told to me by several posters here that mom was very close to the end), I contacted all my off-island siblings. When we all were here, we discussed about telling my mom's siblings that she's dying. We unanimously agreed NO. Mom's siblings all live here on island. Mom's been bedridden for over 13 years and I can count with my one hand how many each of her siblings visited mom in all that time. We figured that if they didn't come to visit mom regularly while she's alive, why should they be told that she's dying? Actions Speak Louder Than Words. I do feel bad that mom's sisters/brothers did not get to say their goodbyes or to apologize to her for not visiting her. But...
So, I can understand where J's family's coming from. With my mom, we just wanted us siblings, mom's children, to be here for mom as she was slowly dying. This was our time with our mother. It would give each of us time alone with mom and say what we need to say privately. But most of all, we didn't want to entertain visitors who would come to say goodbye to mom and somehow it becomes an impromptu get-together party (mom's siblings are very good at that- especially that one time when she was in the hospital which we weren't sure she would pull through. We resented the uncles/aunties laughing and joking in the hospital waiting room. My siblings and I just sat there watching them behaving like it was a family get-together. Mom pulled through at that time.) This was our time, with our mother. I'm glad that we did not call her siblings.
Life is really getting better!
Me1000~You are right about how we have a high tolerance for abuse. I could stand up to my parents..but when I had an abusive boss or supervisor...I crumbled. It brought up too many old feelings like a PTSD type of thing and I felt like the child with no rights or dignity. I am better now, but still struggle with overly aggressive people, very rude people that I encounter at work. Counseling did help me...but I did not get coping skills from counseling simple because I did not know I should ask for that, so I have had to learn much through experience. It is a life long learning not just for us who have these back grounds but life is (at least I think so) more painful for us than someone who does not have all the dysfunctional baggage to carry around. Blessings to you as I know you are listening and doing the very best you can, {{{{HUGS}}}}!!!
And now for TS's and auntie dearest. Auntie is in town for Mom's 88th so I thought that between the three of them one would spend the night so I can go to see my kids. Welp, nosireesir. Auntie is afraid Mom would be even more disoriented than she is normally. But, Geez, she hasnt seen Mom in a year. Have the courage to call it what it is, chicken! TS#1, still in no response mode. Probably sulking since I would not satisfy her "curiousity" about J after the fire. TS#2 thinks since I had last weekend away, why should I need another already? Then she got mad because I didn't tell her about J. She doesnt understand that I just found out how critical this was last Saturday afternoon. So, no offer of help from her either.
I am so relieved to have the guardian, a social worker, helping me. She notified the conservator that I have a family emergency and need tomorrow night away since TS's and auntie dearest would not help. So, I will be spending the night at my daughter's house tomorrow night, and go with them and two grandchildren to "boo at the zoo". This is the daughter I have had the most difficulty with. Maybe now, we can begin to mend fences, I need tomstay away from talking about the twisted ones. I think I can, I think I can. They are in my nonstop brain all of the time now it seems.
I did want to put a few things out here, because I appreciate the insight and input so very much and want to give a few more details.
Apparently it's air in my dad's stomach/abdomen/intestines that is the reason why the GI doc is holding off on feeding tube through the abdomen right now. They've taken multiple X-rays and GI doc says dad's intestines have these non-mechanical blockages, and the word "loops" was mentioned. The doc described it to me as a condition where the intestines have pockets and don't move food/waste through efficiently. I don't know if these are all separate problems or part of the whole picture. GI doc said my dad's intestines are getting larger, even without food in them.
Dad has bladder stones, not kidney stones as I previously thought. I advised the specialist that he is in weakened condition, the doc said they would schedule the procedure but may call it off if they don't feel he's up for it.
50sChild, so glad you posted about your mom's issues with swallowing. I need to find out more - if there are therapies to help him regain his ability to swallow? He is so lucid lately, even more so, it seems to me, then when he was at home. I think the stimulation of having docs and nurses interacting with him, plus proper hydration for once, getting his ongoing bladder infections cleared up... he is as sharp as I've ever seen him and I'd like to see him at least be able to eat/drink orally again.
More another time. Hugs to all, appreciate you so much.
gladimhere-Im so sorry, you both were lucky to have eachother. You do need to rest. I understand, sis and I had to take mom off the breathing and feeding tube back in the day. She died very quickly. Its never easy but you have us too as you said. J will be watching over you. Your going through so much still, I wish I could be there for you. Im there in spirit.
Veronica91- Your right about how quick. Also reading what you wrote to Glad, made me think of my mom. You words are helpful to both of us.
Margeaux- At least your hubby had some fun :) Hopefully things get better for your mom.
emjo23- I think a lot to, but thats a good thing right? Just put what needs to be done down. Then you could put what is the hardest for you to do in one colum, the average or easiest in the next. See what skills your family and friends have, as well as any services that can help you out. I write lists nonstop- of course, I dont do everything on them! Your also correct like Sharyn said "When you have been brought up treated badly you gain a very high tolerance for being mistreated. That is unfortunate as then you put up with it from other people and you have to learn to not accept that kind of treatment" Im rereading my millions of posts from day one and everything all of you had said to me. I know some of you may have given up on me, but I understand why. I do need to do something. I know what I want but its just getting there.
AlisonBoBalison- I hope your dad is able to get his nutrition and strength soon. Glad your mom backed off a little. I hope you hear some good news soon :)
bookluvr- I understand and you can "spam" your hugs anytime you want! Hugs back and you get some rest too :)
50sChild- Very good advice for ABB :) I hope Pam is doing good :)
Allison, your Father has said he wants all means. That leaves you with a clean conscience. Do all you can. Go for Tube. You may see your Dad live a long time without being able to recognize who he is. For whatever reason, that is is wish and command. Who knows, maybe he wants everything done to be there for someone he has promised to rally for. Maybe it is you. If finances are a problem, you've got to talk to the Hospital Social Worker. Short of that, you are ever bit as much as a Mountain Climber, Everest challenge.
Your mother, she has old issues that aren't your concern as regards your father. This should be clean of your mother. Maybe your mother is side-handedly asking for your help in her processing some old confusions about your father. That is ok. But read hard about "Projection" and in this tense time, remember your instincts are best. You can take into consideration your mother's old hurts and meddlings, but ultimately, it is your father you are coming to terms with right now.
He is awfully young for swallowing failure, but I only say that because my own Mom was 89. Here is another Pam plea. I don't know what condition your Dad is in. Perhaps a smoker, obese, perhaps a genetic history someone will predict death date 20 years from now. I DON'T LIKE THAT YOUR HEART IS GIVING YOU SIGNS. Glad you are seeking therapy. Hoping your therapist is able to pierce through the obvious to the underneath. Not many of therapists can do that. But any therapist (or enlightened friend) is what you need right now.
You are witnessing decline, you are a trenchmate. Your father may rally and be fine. We can only trust the huge investment and caring of the staff who cares for your Dad. As for you, that you have no control, really, anyone can see how much you care. Will be thinking of you.
Have they given you any details about what they think is wrong with his intestines?
I suspect it is time for hospice but I would not even raise the question. Dad has already said he wants everything done to save his life so until he can come to terms with the idea of dying let the Drs do as they think right but not anything that will cause him further distress. make the drs tell you the truth about what they think is going on. Some one has to know so they are prepared to make decisions when Dad can't. mon has no say in this.