The Caregiver & Dysfunctional Families: How are you doing?

Rays of love light and peace to you all.

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".

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. 😎

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....

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).

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.

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

Good advice here. 

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.

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.

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.

Welcome Holdin.

My mum will never go to a nursing home.

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.

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.

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?

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

It was tough listening to the pastor praise my MIL. I have heard from the twins how abusive she was of them and I saw how enslaved her husband was. My BIL and I have the emotional scars from how she treated us. She didn't like us because we took her girls from her. We also saw how much she loved money and never got enough plus acted poor.

My wife's therapist told her that her mom was a narcissistic with borderline traits. From my reading and experience of her, I think she was a borderline queen/witch as described in the book Understanding the Borderline Mom.

We wife is drai ned. She is ready to go home and sleep for a week.

I'm glad this is over. The witch from the west is dead and cannot hurt any of us anymore. We are free at last. No more visits here for Christmas and Thanksgiving. We will meet with her identical twin sister and husband in a nearby big city for several days.

CM - it was a phrase I picked out among the things she (the nephrologist) was describing about metabolic acidosis and metabolic syndrome in general. She was trying to explain how mom was being affected by various things, especially her refusal to eat healthy (or even normal) food. (Mom's diet has been REALLY bad lately and she just throws out the meals food I make.) I don't think the doc is a tunnel-vision person in general. But no, there was no blood work in the ER - I think because they assumed blood work is regularly done in the renal unit, AND because they were racing to check for the infection I THOUGHT mom had and get her to her dialysis appointment, where they could follow up. Hmm. I do know the renal unit does blood work but I don't know how often. Something to check up on.

nature73 - I really need that book.

(((((cmagnum))))) I hope your wife is doing ok.

Well, I talked to the social worker today. It was a good discussion. She is going to talk to the doctor about designating mom "palliative," which she doesn't think will be an issue, because mom isn't going to be cured, ever. Her treatment won't change - nothing will change. But it sounds like it will mean we'll have access to home support services at no cost under provincial health care, plus an increase in home support hours, and no charge for medical equipment we may need as well (like a hospital bed....which frankly we could use now....or if we need a wheelchair, a transfer lift, etc.). And that should mean I can free up funds to get some respite care, or some housecleaning help, or SOMETHING.

Coincidentally the occupational therapist phoned me today - we hadn't talked since mom got her walker, and she was calling to see if the file was to be closed or if we needed anything else. Soooooo I told her about the palliative designation, and we arranged for her to come over next Tuesday, assess mom, and help me figure out what we need in the way of medical or safety equipment.

I was going to phone the community nurse who coordinates home support, to talk about updating mom's care plan, too....but I ran out of steam after all that! (Talking about death with a social worker has that effect on me.) So I'll do that tomorrow.

I told my BFF that I wanted to have a plan in place BEFORE I tell my brother mom's had a downturn....so that it would at least LOOK like I know what I'm doing. She said, "If you have a plan, that means you know what you're doing." Which....I never thought of it that way, lol! Isn't that dumb? I just thought knowing what you're doing meant always knowing the right thing to do or the right answer, or having a certain kind of confidence in your decisions and abilities, I guess. Ha ha ha ha!

Dori
Kudos for you in all that you've done for your mom

She nephrologist - I do beg her pardon, I plead age and the associated vestigial sexism.

The reason I asked about the blood is that there are markers (protein? markers? Don't quote me) which reveal silent "events." The renal unit will be watching her creatinine closely, I guess? Might be worth asking what else, as long as they're not going to get huffy with you.

I give thanks yet again for our lovely GP. It's so hard to find someone you can really lean on to keep all the threads in hand.

Finding comfort through Jesus Christ. By the grace of God and one day at a time🙏🏻 All we can do.

Free free to make comments about my experience of my MIL's funeral. My wife is totally exhausted. We are home now! We signed the paperwork related to our old house closing tomorrow and I've contacted the power company about turning the power off. We had a few things to look forward to this week!

CM - the renal unit seems to track everything in mom's blood work - not just creatinine. I don't find them huffy or anything. (Also I've met with 3 nephrologists and 2 are women, lol.) The nephrologist showed me a bunch of charts with numbers on the computer. I just don't understand them. But they do make adjustments to her weekly blister pack of meds all the time based on blood work. For example vitamin D will appear one week. Then it might be taken out a few weeks later. Magnesium just appeared a few weeks ago. She also has been given a calcium supplement. I don't know the meanings of all these additions and subtractions, but I did manage to ask about the calcium....apparently it binds to the phosphates (or phosporus? I always mix them up) from all the cottage cheese she eats so it can be dialyzed out. So I know they are constantly looking at her blood work. They also adjust the way she's dialyzed based on it. Dialysis itself seems like a constant chemistry experiment!

My GP seems pretty thorough - she's been tracking MY creatinine for years, just in case the kidney disease is genetic! But the deal when she took mom on as a patient is that mom's renal care had to come from the renal unit. (Which is totally fair. She was, at the time, caring for 5500 patients, thanks to our doctor shortage.) I honestly do find that the renal unit here is FAR more thorough and involved in patient care than mom's former renal unit in big, resource-plentiful Vancouver.

MsMadge - thanks, that honestly feels undeserved! I wish I could be nicer and not lose my patience so often.

Mom and I snapped at each other last night. I was trying to cut up some cardboard for the dumpster in the dining room. Mom chose that moment to decide to nap on the couch. (I didn't know she was trying to nap.) This is a constant battle with us - she has a very large and perfectly excellent master SUITE, but she insists on sleeping on the couch half of the 18 - 24 hours she sleeps per day, turning the whole apartment into a sick room. (The kitchen, dining, and living area is open plan.)  And then I can't have ANY bit of life outside the very tiny second bedroom, where I don't even have enough floor space to sit and stretch out my injured leg. (Being "imprisoned" in my room is actually one of my biggest frustrations about staying here.....I offered to get her a couch and a TV for her suite, but that just made her mad.) She shrieked at me, "Stop it, stop it, STOP IT!" I snapped back, "It's 7 PM. Go sleep in your room if you want a quiet nap!" And now I feel like crap for yelling.

Doriane, no need to feel like crap, your mom is being selfish. Perhaps you can trade rooms with her and then you would be happier hanging out in your suite. I have found the more you let people push and shove the more they push and shove. This is not all about her, you are part of the equation whether it suits her or not.

You do a tremendous job of a tremendously hard job, be more forgiving to yourself🐺

Doriane, Patients on dialysis do have checks on BUN and creatinine ratios to determine the effects of dialysis. It may show as a ratio number identified by BUN. Or it may be hidden in a battery of figures that make up the GFR number. The lower the GFR number the more critical it gets. A GFR below 25 you are on dialysis or need to start. Above that you are in various stages of CKD. I am not on dialysis, but I'm headed in that direction. My GFR currently is 29 which is not good. But, I've maintained that number or slightly above two years which at my age is fairly good considering I was diagnosed with CKD in 2001 and borderline for one to three years prior to that. Plus I'm a diabetic which causes additional dietary issues. Even though I cook for my family all the time, I generally do not eat the same things they do. Nutrition is critical for kidney health, but it's not impossible. I can't follow many of the kidney diet recipes because they aren't good for my diabetes. I go to the hospital dietician about every six weeks. I have blood work every four weeks. I don't like my diet, but I stick with it. I treat myself maybe four times a year. I've learned how to combine things and create my own recipes that my registered dietician checks for me. For me, it's strict discipline which isn't fun.

cmagnum - I feel great empathy for your funereal experience. It was the same for my grandfather's funeral. We listened to people praising him for his community involvement and role as a community pioneer. Nobody ever talked about how mean he was, how much of a narcissist. Nobody talked about how he beat his wife and children. When he died, my mom unfurled for possibly the first time in her life. I can say, though, that we had a protester at his funeral! A man stood outside with a picket sign that said, "A bad man is burning." I thought it was funny. I was the only one.

Isthisrealyreal - thank you for that. I don't think switching rooms is going to happen. I don't think I want to experience that kind of fight with her! Plus I seriously don't think she is going to be long for this world anyway....which is probably why I feel so guilty about snapping.

Becky - I sort of understood some of that! Lol. I know what you mean about the nutrition. My mom managed to maintain her kidney function enough to keep dialysis at bay for an extra 10 years, just through following the dietician's nutrition program. Once she started dialysis, though, she kind of gave up and started eating whatever she wanted. (She really missed nuts!) Now I can't manage her diet at all. She just won't eat properly. I think that's largely the dementia at play.

Dorianne, I watched my dad at age 68 from kidney and liver failure. He never drank, smoked, etc. But he would not follow his diet. He thought because he was thin he was healthy. Just wouldn’t change. I try to be strict, but it is hard.

SpiritDancer, almost a majority of the elderly do not want to go to a nursing home. What will determine this ultimately - is you. How far are you willing to take care of her? I'm from a culture where we take care of our parents/elderlies (grandparents, too) at home. However, my dad did look into it for bedridden mom but I think, deep down, our culture prevented him from actually doing it.

How far are you willing to keep her at home and take care of her? Do you have a limit where once she reaches that line, it's time to put her in a facility that can watch her 24/7? Before that time comes, I have read sooooo many people whose parent(s) did Not want to go to a NH (nursing home... Not New Hampshire). They struggled with the thought, then they found ways to get the parent there. Even if it meant tricking them into it. It would be best if you do some searches here and find some stories to read - to give you ideas and a game plan.

CMag, about the eulogy.... I was with my sisters as they set up the funeral arrangement with the Catholic church. When the lady asked if anyone was going to give a eulogy, I immediately thought in my head, standing in front facing the audience - in church - .... Well, my dad physically and verbally abused us kids. I remember the time he would knock my brothers to the ground and then kick them hard with his steel toe work shoes while they were on the ground. Or the time he .... " {{{ shuddered }}} Nope! I would have to tell the truth to everyone. I didn't want to lie. So, I didn't want to do the eulogy. None of us kids wanted to do it. Poor priest had to make something up - because my dad hasn't gone to church for over 30 years!