The Caregiver & Dysfunctional Families: How are you doing?

Dorianne. Love the title! Those future caregivers need to hear from those in the trenches.

Metabolic derangement! Love it :) So THAT's why I feel like crap after I've eaten an entire bag of Percy Pigs - I must be metabolically deranged.

I think the nephrologist might possibly be experiencing some Specialty-related tunnel vision, there - a cardiac or cerebral event wouldn't do your kidney function any favours either, which I'm sure he'd have considered... but you never can be completely certain that consultants will look past their own pet organs. Did they take any bloods at the ER?

Countrymouse - I did get mom checked on Monday. The ER checked her for a UTI (negative), and the nephrologist said this (the "brain change") is likely part of "metabolic derangement," which is caused by her kidneys not working, dialysis, and poor nutrition. Emphasis on the poor nutrition (which has been REALLY poor).

cwillie - I see your point. I'm really hoping it doesn't come to that. That's why I want to talk to the social worker about palliative care/home hospice. Quite a lot of it is supposed to be provided by our provincial health care (i.e.: equipment, more home support, some home nursing), so we may be able to pay for additional help on top of that.

Guestshopadmin - mom has hepatitis vaccines every year due to the kidney disease. I don't know a lot about C-diff. But mom has not been an active alcoholic for 3 decades.

Mom fell getting out of bed this morning. She says she didn't hit her head but I only heard it, didn't witness it. She's pretty "out of it" again. I think the time is nearer than even I care to admit.

I wish my stupid brother had come for Christmas. I tried to tell him how bad it is, that it might be her last Christmas. He said he'd come up "when the roads are better," but he hasn't been in touch since New Year's Day. I know he can very well afford to fly, which is only a 45 minute trip. And even if he couldn't afford it, mom can. Maybe he just can't deal with it, I don't know.

Hey all. Wanted to share a laugh. My FIL called on Monday; he's looking at hiring housekeeper and wanted to verify independent contractor has to get 1099 at $600 annual. I decided to call back rather than refer to hubs as per our agreement when his parents call because hey as a CPA that's an easy one to answer. FIL was polite and we chatted about making sure that the person had insurance or he got a workers comp policy because homeowners would not cover worker in his house. FIL is talking to a CNA at MIL's skilled nursing facility about doing house cleaning on the side. He seems to think he'll be able to get away with $50 per month! With only FIL and a dog, it sounds like mostly sweeping their hardwood floors, dusting, and some bathroom cleaning for end stage COPD. Ya know, the hiring of a person that I recommended a year ago to help keep MIL home that NEVER happened. FIL HINTED that they would love to see me visit and that tax season must be keeping me busy. *silence* FIL said that he would have to find a tax professional to do taxes *silence*. I only said that I was SO GLAD that he and MIL on Medicaid in nursing home have plenty of money for him to stay home, get care, and have someone in their city do their taxes. Silence on his end at that point. When I told hubs that I had talked with FIL, he could not believe it. "You're so calm. No issues". I responded "I answered question. When pressed about anything more, NO is a complete sentence." FREEDOM my brothers and sisters!
cmag, sorry about BIL's timing. You have our support.
Dori, I don't see it as threat. My mother was alcoholic, then sober, but she would periodically start the poor me...when she said as adult that she could manage one drink, I said the consequence was me leaving for 20 years again. Not a threat. A natural consequence of negative behavior. The poo would be a deal breaker for me - especially with alcoholic that may have Hepatitis or C-Diff. Take care of yourself, too.

My mum will never go to a nursing home.

Welcome Holdin.

Dorianne, I'd be careful using the nursing home as a threat to keep her in line because the reality is that she may very well have to go to one before this is all over. I see that you plan on home hospice care, but the reality is that in those last few months or weeks she may need far more care than you can give her in her home, even if you try it may not be the best for her and it certainly will not be the best for you.

Dorianne - The inability to get off the sofa even for something most people (including her) would consider extremely urgent may be a sign of brain changes. You get a loss of "initiation" - you need to do something, you know how to do it, you want to do it, but the little link that connects the plan and the action breaks and the person literally can't get started. I'd get her checked out if it were me - could be something has stepped down.

Thank you for this thread. When you can’t sleep it is a place to go for insight as to how other caregivers are coping.

Good advice here. 

He didn't even have heart trouble and just like that heart attack and gone. The Lord was ready for him. Anyway, I don't know why that moment popped in my head now robbing me of sleep. I do miss him so very much, everyday. But what got me wide awake, was my siblings who didn't even care. Didn't even call my mom, didn't Even care, still don't still haven't spoken to us in 4 or more years sincesince my parents moved with me. I often wonder is it because they feel guilt or because they might be asked to help? I don't know it only saddens me for my mom. I never really had a relationship with them. Thanks for allowing me to share, maybe I can try and sleep. It's good to know I can come here.
May God bless all of you and help you through your own struggles

I am having a rough night. Trying to get to sleep and then just out of the blue, flashback to hospital, and Dr. Declaring my Dad died. Oh I fell to my knees weeping like a baby. It was unbelievable to me. I may have gotten a little hysterical.

Oh my this is so sad but welcome to reality. I was living this as well until it started to destroy my family and world and I had to cut ties with all of my siblings. They are narcissistic and physical against my mother. I have lost my mother to their crazy world. I plan not to even go close to where they all live. So thankful that I live in another city and got away from the drama years ago. Just never realized it would get so nasty in our old age. Too late for them to try and make something of their lives with no solid education, work history and financial irresponsibilities. Plus being abusive, neglectful, dysfunctional parents. They are now sickly, on probation and miserable. All competing for my mother’s attention (money).

So....good evening all. Almost good night. Thank you everyone for your support.....I really don't know what I'd do without this thread. I don't know how I managed before knowing you all.

Mom....I think she is a bit better. She looked better today. Her skin was plumper (no doubt from the IV fluids) and her eyes seemed brighter. She didn't get up till 4 but that's normal.  She started out the day with the intent to do a few things....but she got sucked into the TV and didn't get up off the couch once in 7 hours. 

She is still pretty defiant and combative, but I've kind of put my foot down over the last few days. I've told her, in no uncertain terms, that we are doing this my way from now on, or else I am going to look for a nursing home for her. I hated having to "go there," but nothing else was getting through to her.  Being kind and gentle and supportive sure hasn't done a d***ed thing.

I also told her I need more help (which is what I want to talk to the social worker about....along with making future plans for palliative care/home hospice). I can't cope with everything mom thinks I should be able to cope with, and I told her so. Not for the first time....but it's definitely the first time I've told her I'm not putting up with her sh** anymore.....LITERALLY....and figuratively.  (She has no idea what this is like....she never had to be a caregiver to either of her parents.)

The one thing I never signed up for is cleaning her poop up from all over the apartment, and I've spent 5 days, exhausting myself, cleaning poop. The couch is ruined now, from poop.  Just because she is too apathetic to get up and use the bathroom, or to even go there and change the Depends.  (When I found her sitting in poo on Sunday, it's because she actually did change them....without ever leaving the couch/her precious TV.) And then she's too apathetic to wash it off her hands.  Yeah, I'm sure some of it is her confusion and dementia, but it's mostly apathy.

I don't know if apathy is a condition that comes along with dementia, but I'm pretty sure it comes with her depression. She just feels sorry for herself, all day long. I think that's why she lets herself get zoned out by the TV, too (and has done long before dementia).....because of her depression. It's an excuse to be an apathetic chain smoker.  (Changing her Depends on the couch, so she wouldn't have to leave the TV?  Yikes.) 

So I told her I didn't sign up for cleaning up her poo all day, every day, that I'm exhausted, and so we're doing this my way now. And two nights in a row - both times, after trying and trying to get her to do it on her own - I've literally taken her hands and pulled her off the couch (even though she protested), made her walk to the bathroom (still protesting, even though I held onto her the whole time), helped her change her poopy Depends (still protesting), and got into her real bed (away from the TV).

She just keeps saying, "Leave me alone, leave me alone." The whole time. She wants to feel sorry for herself and wallow in it, wallow in being some tragic figure. She can be sitting in her own poo, with poo on her hands and legs, trying to light a cigarette, and she'll be saying, "Leave me alone."

Minus the poo, that's exactly who she was in her drinking days. Fallen on the floor, surrounded by some spilled drink, or broken bottle, or curtains pulled down, or some other mess, whining, "Leave me alone." And I'm done. I'm so done. I'm done with her apathy and self-pity and acting like the victim of every other human being in the world.

She ALMOST hit me on the head tonight, in the bathroom, when I was helping her get her old Depends off. I could feel her anger at me for making her get up and get clean. But she caught herself, and her hand ended up just touching the top of my head. I didn't even blink. I repeated what I said back in November, when she smacked my hand. "If you ever hit me, I am out of here." She probably remembers that, which may be why she caught herself before actually hitting me. This time I added, "And that means a nursing home for you."

It feels cruel, it feels like a threat. It IS a threat. I hate doing it, but it's working. It's the ONLY thing that's working right now. I said, "I'm sorry if you don't like me talking this way, but this is what I sound like when I'm getting sh** done."

I also told her the nephrologist said she is weak and confused and declining faster because of poor nutrition. (True.) I told her flat out if she wants a shorter, more uncomfortable life, then she can keep going the way she is, or she can, at the very least, drink the Ensure/protein powder milkshake once a day. So, two nights in a row, I've made her the milkshake, and insisted she drink all of it. And she did.

I was more gentle about the milkshake because.....honestly, if she wants to suffer from metabolic problems and die sooner, what can I do? I just won't put up with the poo everywhere. Apparently my line in the sand is drawn with poop.

I'm also rationing out her cigarettes. I am letting her have 5 at a time. I told her if she wants more, she can ask, but I'm not going to give them to her willy-nilly, just for her to chain smoke and make herself and the rest of us sick. She'll have to make 5 last a few hours at least.

The social worker called me back this morning but I was dead asleep. I didn't really want to talk to her with mom around anyway. (No privacy in an apartment.) So I left a message about my availability tomorrow. Hopefully I will get to chat with her then.

Anyway, sorry this is so long. It's partly an update, and partly I just needed to get it out.

I hope you all are having a lovely, deep, and pleasant sleep by now. I'm going to jump in the shower before I hit the pillow myself. Love and hugs to you all....

Hey, hey.
First time caller.
Long time listener.
I've stumbled onto this thread before. Probably like tonight, when I should be in bed, but I'm not. Because with mom here, the middle of the night is the only time I can read an entire paragraph or rub 2 of my own thoughts together...have a uninterrupted dime in mind, can swing a cat without hitting repeating loops of the same 4 questions, I answered all morning....
Caregivers are under appreciated and supposed to take care of themselves, too. There are resources, and forums, to help...If they stay up researching during the only time quiet enough for concentration needed (equal to late night study sessions I recall from college) to complete essays or term papers...work that could only be accomplished in the vast lonely corridors and floors of the university library stacks...you know, before this Fancy A** Phone and Google, back when dinosaurs roamed the planet?

Omg, I feel like I'm right here, in my real life, hanging out with the half dozen, or so, people alive than I can be myself around, scratch my rear, stay braless, and have a smoke. While we bi*** about family and joke and love each other so much we flip the bird at some obvious ugly truth spoken aloud and laughed about all 'round.
I'm the 54 yr old baby in my family, grandma and a damn good person loaded with flaws. I have 3 older half sister's who are all supreme bi***s and apparently have an ass-ton of unresolved issues FROM CHILDHOOD. A "thing", I've learned from my late-night online sessions, that will resurface... IN MY FACE...when adult siblings have an aging parents whose health has begun to deteriorate and are in need of care and decisions to be made.
My lovely siblings turned on me over 2 years ago when I started taking Mom home A lot because she was changing, and worrying me. I soon left my job, and didn't leave her home alone again. (She thinks that was a couple months ago and says it's about time for her to get back, needs to water her plants).
Long story short; I never got into moms finances...one sis helped her. We are all working class paycheck to paycheck. Mom didn't have money either. Had mom home for a few weeks and started kinda...looking, seeing...her bank activity and bill paid.
Caught that sis pilfering her SSI. The tight bi*** had hoarded herself about $3000 over time, while she had my mom at broke, penniless by the end of each month.
Busted out and forced transparency, I thought stopping the sis and moving on would keep her, all of us, honest. No need to act on it any further.
Oh I WAS naive!
THAT was the beginning of a 2 year and ongoing mission for those women (Oh yeah, they had conspired) to convince mom I.....ME...was stealing from her, making her pay our bills, and i...ME was gonna spend her into the poorhouse.
They badgered my DEMENTED mom relentlessly.
I eventually was awarded guardianship, I have documented my proofs.
To this day, they are doing this to my mom. With nothing to back up their false accusations.
They don't need to try. They aren't doing this for courts or the authorities. They only run this agenda on mom. I'm not one of them. They hate me. They have since my birth...I DID NOT REALLY KNOW THIS all my life. The horrible, sad, ugly, sickening thing about this is....it's cruel, so very cruel, to work on mom, try to manipulate her fragile mind. She is just a casualty to them, in some CHILDHOOD, immature sophmoric imagined vendetta with me, because their dad was an a$$ in 1954. My dad wasn't. Then I was born.
These women are 63...67...and 73 years old! Acting like angry uncooperative children of a divorced mother.
My whole life has changed. What I thought were family...my SISTERS, is not. I just keep going. One day, one day, when mom is gone, I will NOT have to smile. I will NOT have to be the one who is acting like the adult here.
Everybody has to die, and I wish mom a long HAPPY life. But one day, she will be gone, and I'll be shed of those women.
There will be no more turning of the cheek.
If they are lucky, they will die off naturally BEFORE mom is gone, then they will have escaped earthly payback.
Okay then, that was but a fraction of dysfunction junction.
Love you, my forum homies.
I'm gonna go back to reading your stories now. Keeps me from feeling like a lone wolf. 😎

nature73 - it's funny you should mention "book"! Last week during one of mom's nasty fits (over the chain smoking!), I started thinking the book I REALLY needed hasn't been written yet. And it would be called, "The Adult Child's Guide to Caregiving Without Catching the Crazy".

Rays of love light and peace to you all.

With MIl's funeral tomorrow, BIL chose today to rehearse the pain she inflicted on us two men over the years and how narssistic she wss. The twins responded by saying we alre as dy know all of that and she would not have liked anyone we married. They left to tend to some things and I went back to the hotel for I was still tired from the drive. We leave here on Thursday to go sign a document related to selling our old house which closes on Friday. Our profit will be deposited into the bank that day. I will be glad when this is over.

Been following this thread for a while. I know caregivers are busy, but has anyone thought about writing a book? It could be liberating. Also there are many suggestions here that could be helpful. Oh wait...probably have to get releases from AG.

Good to hear from you trying. I hope you can post more often.

Dori, I hope your mom is feeling better today.

Hi all. It's been ages since I posted here. (last Sept. I think). I went back a few pages and read posts from old friends and new comers. I miss this place and wish I had more time to visit the forum.

My world has gotten more hectic. The case loads at my full time job doubled in Sept. and the program is in chaos. My boss is unraveling and blames staff for everything. I almost quit but decided to stay on because I love working with these kids. I still love my second job and I need the income but I'm so tired when I get there after school, it is tough to do my best work. My parents and church occupy my weekends. I hardly ever get to my computer, it can be a week before I even look at my personal e-mails, let alone visit my forums (never now). Anyway school is out this week so I'm checking in.

Mom and Dad have declined quite a bit. They are still in their home but I don't think that is sustainable for much longer. Not much has changed re: family dynamics but I've found my way to work with what is. Bro (who severed himself from the family because of the crazy) has re engaged a little but being very guarded and maintaining his boundaries (good for him!) Sis has not changed at all but now she and Mom have an entourage of caregivers to order about and micro manage so she leaves me be for the most part. She does sometimes call when I am at my parents to make sure I am doing things right but I just yes her to death. Pretty easy really.

I think of you all often and wish for good things to be in your lives. I want to visit more often and I hope I do.

Still catching up. Got aways to go. Good nite, rays of love and light to all.

Hi Moose, welcome aboard. This dysfunction junction is full of some wonderful loving people you will find undestanding, acceptance and some good advice. Keep posting.

C Mag reading the Jesus call to self denial bought tears to my eyes.
50's I think you voiced what a lot of us feel. At least a lot of what I feel. And yes I agree with your advice to Golden. I so truly admire her example of courage and strength and freedom. Her words of wisdom have been golden to my heart. there are so many other poster who have touched me in the same way I reach out and let them know my appreciation. And now you, how you so honestly and truthful expressed your pain and how you wish you could help others was so beautiful. Its post like this that open my heart and my mind to the reality of my life and my journey and my need for love and freedom form the sickness and manipulation of others from selfish or mental issues.
The need to break the chain. The need to turn some of the dark rain to sunshine. I will never in all my life forget the moment I found this forum and how much it has helped me in every essense of my struggles. I truly appreciate all of you loving beautiful people in this forum.

I am still catching up. I hope all of you are well. I tell you on my days I am off line and things happen it feels so good to beable to say I cant wait to get on AC and talk or share this or that. My bestties are all gone and we are only human so we can get tired of the same old cry and whine. Its good to know someone care or is listening.

These past few days I was overwhelmed with the sewer line issue and this roach nest ont top of everything. Its funny but not funny how I get frustrated knowing how my mother moves things. I call my self hiding stuff I use. Went to fry so catfish one of our favorites and the cord is not where I keep it. I dont know if its sabbatoge or just my mother discovering andadding it to her shopping cart packs. The sabbatoge is a reality for me on my mother part and my sister.
So when I see sometthing that looks like sabatoge it takes me to a place. sometimes when I have realized it I think back on the times I was walking in circles looking for something or wondering where something could be not even thinking of that possiblility.

Sohappy to be statingtherapy.

Linda soory for your loss.

Dorriane, I hope the social worker can give you some type of repite or solutions. I relate to a lot of your posts. Wish I could give some advice on the poor appetite.

I do realize that part of my frustration is that I am a professional caregiver. But the thing is that my home is not a hospital and I dont have the resources and help and backup I have had in the hospital. My skills are useless if they are ignored and not respected for what ever reason. In hospital its a team. If a person dont eat or bathe we work on it together. The people skills, and professional skills are out the window without the back up. and thats part of my frustration.

It was really cuted this week. I go through this thing of frustration and just say I am not going to do this or that in the house. Becuase the cord to this skillet was gone I had to use a hot plate and it took longer. I couldnt leave and do other stuff so I started in on the fridge which was on the agenda. I am talking flour coverd shelve with junk and spills. So as I am taking them out my mother started fussing at me because I took all three I didnt realize she had placed herself to start cleaning them. She usually just watch me sweep mop clean what ever. So we had a nice little time working on that fridge. I went to store and when I come in she says all proud "look in the fridge." so you know I put on this big wow you did this this is awesome show for her. If only it stays that way. Part of it is the canned sodas that she put in freezer and burst or spill in fridge but I cant say to my sister not to buy canned soda she would never understand no matter how I explain it it would just be seen a a put down or critizcism. Same iwith nephew.
My "aunt" J the one I had tried to get to come and clean weekly. (she worked my mother up and it was all agruing and fussing) she came to bring my mother flowers for valentines and says when my twested let her in and saw all the pee and do do she responds by saying someone needs to get this up.

I am still catching up. I have lotds onmy mind. Oh and this shed this Cman has been workingon since last year the handman has a leakin the outside shed and water was on floor on inside. Its so frustrating. I didnt like the job he was doing I let him know but I had already paid a lump sum on it and I felt I was way over charge and told him so. since then I havbe bought and had cabinets installed at a good price and so on but the water thing was my inital problem because of the mold and deterioation. Its still the problem Dang! heavens to mergatroy. Help.

Rays of light and love to all.

Sharyn I am right there with you. Quiting is rough.
Best wishes to all of you going through such challenging times, but you all will get through it. i will keep you in my prayers, all of you.

Welcome HB. This is a wonderful place to come and chat. We have all been in similar situations. I don't know what I would have done without this site through my caregiving years and even now after.

sharyn -glad you are feeling better, I hunker down and stay in more and more now, when it gets cold,

cwillie -I am with you. I don't get it either. I have been trying to imagine scenarios which would result in broken hearing aids and I am drawing a blank. They do have hard floors, but you would need more than that to break them. Nutcrackers??? And losing them? Sheer carelessness there like dropping them, I imagine, but someone has to sweep the floor. Or would a floor polisher chew them up? They are stored in the nurses room with meds, so they should be safe there. Is someone taking them and selling them on the side? It doesn't make sense to me either.

cmag - glad you made it there safely and have a time to rest before the funeral.

dori - sounds like you need respite and your mum needs 24/7 care. Hopefully you can get her to eat better. Glad you are getting some rest.

((((((linda))))) glad the memorial went well. It must be hard to go right into looking after business afterwards. Nice that the kids wanted the old china. Scanning seems the thing to so with photos, but it can wait, You sound exhausted. Can't you take a break till you are ready for the next phase? I used to be an eveready bunny too, but I ran out of energy. Be sure to take care of you.

Hellebore - welcome. Your mum sounds challenging and you have an aunt in the mix too. Woah! Maybe it is past time to set some boundaries with phone calls, for example. You don't have to answer all of them. I don't think you can do anything about her unreasonable behaviour, if she rejects treatment , or her unreasonable expectations, for that matter, but you can change your responses to them. She is responsible for herself which includes planning for her future care. What are her plans? I hope they don't include moving in with you. Maybe it would be wise to let her know what your expectations/boundaries are. My mother had untreated borderline personality disorder for the first 100 or so years of her life. Boundaries were the only thing that helped and distance - emotional and physical. Come back and vent any time. We understand.

More snow - yuck and R is driving back tonight.

Thanks Pam. I am going to bed early tonight.

Thanks GSA. Seriously, it helps my mood immensely just coming here and seeing so clearly that I am soooo not alone. You know, our society preaches how we're supposed to be devoted to our elders and all that crap. What about those of us whose elders have never been particularly devoted to us?