The Caregiver & Dysfunctional Families: How are you doing?

Golden, mom just went in the NH this spring so I haven't had to file NH expenses yet. I was told by a local tax preparer that you can claim 100% of the cost, but I know the Rev Canada site says otherwise. I "think" you are only able to claim attendant costs when in AL but NH is treated differently. (Of course ask a dozen bureaucrats and get a dozen different answers.)
Since mom used to pay me for attendant care I found it better to claim the full amount as a medical expense, but one year I was sloppy and didn't double check and claimed both...an audit, then penalties and interest, what a headache :(

upset - that was so disheartening - sense of entitlement again and the lauding of the golden child. Each of my children got at least one of those "letters" from mother - the ones which, in the latter days, I used to let sit on the little walnut chest by the front door until I had summoned up the gumption to open them. They did much to destroy their relationship with her. Once she called and referred to something in one of the letters, as of yet unopened. Oh my, she was incensed!!! If she had written something more positive I might have looked forward to opening them.

Just got a call from the NH, The last set of hearing aid batteries arrived safely! You know you are a caregiver when your day is made by a package of hearing aid batteries being delivered properly.

Glad the review went well, and "Yay" for you and PJ for the group work!!! Since the days of involvement in community meetings, I have found group dynamics interesting.

Thx cw. Claiming attendant care for AL and full costs for NH was my understanding from the advisory site. She has a great tax accountant, so I will ask them, We are new at this too - she has been there less than 2 months, so there is no rush. But being prepared for next year would be novel and a good thing.

Lucky, I know how you feel having a brother who bullies and lies to the parents. My brother once threw an encyclopedia at me. It cut the side my face/temple. My dad asked what happened. My brother said I fell and hit the side of a console TV. The book was laying on the floor and there was some blood on the corner. I showed my dad. My mom intervened and my brother was off the hook. I was told not to tell lies about my brother.

I'm sorry that happened to you Upsetsister.It is awful to not be believed.
My brother's words hurt sometimes more than being hit.They made fun of my weight and around age 13,I had some facial hair and we were sitting at the breakfast table and they both started singing at me"Lu's growing a mustache,Lu's growing a mustache" and I started crying,out of embarrassment and Mom told them to stop and they lied and said"We said Lu Brock"....In my 50's now,that's still as clear as a bell.It stung me to my core.

Lucky, I think incidents from childhood stick with us forever. My brother died last summer and I can honestly say that up until about a month before he died he never changed. Neither did my mom. I'm 68 and I still remember all of his stunts.

Lu, my older bro did exact same thing to me. Around 13, he pointed at my face and mocked me because I have a raised mole on my cheek. I felt self conscious and embarrassed but I wouldn’t let him see that. One time I told him that his words about me were hurtful and he said for me to lighten up. He often made fun of me. He told me no guy would ever want me, I was too ugly... just mean stuff, and thing is looking back, I don’t know if he was trying to be manipulative, if he was just that cruel, or what his deal was! He was physically abusive if he wanted to be, and no one ever stopped him. I was his punching bag at will. He was a terrible brother. He wouldn’t allow that kind of behavior from his own kids now, thankfully. I honestly think my bro was a combo of bully + he was insecure. He liked it when he was best person in the room. He’s always been full of himself. Well... it’s just too bad because I was a mostly adoring younger sis until late high school when I’d had enough. I wanted to be friends with him but he was just too mean. Sounds silly to me to talk about this stuff from so long ago, but some of the patterns still remain. He will still crow about my perceived “bad” qualities to me. He likes doing that to me. 😠 Why do they ENJOY being jerks??

Ali, I don't know why men have to do that - particularly if it's their sister.

I’m stupidly tired today and lately and for forever now. It’s a problem and I’m not at all sure what I’m going to do about it. Resting isn’t the answer... unless I want to rest 15 hours per day, and I can’t do that! Grr. I feel like my quality of life just isn’t there because I’m always fighting fatigue. Just whining.

Got my flu shot yesterday. Today I woke up late, did some work at old house, drove back up. It’s 7pm and I’m ready to DROP. I’m drinking coffee because I can’t drop, I have things to do!!! But I’m soooo painfully tired. And now my stomach hurts and I won’t sleep well because coffee. I need a better answer but I don’t know one. I wonder if a mild reaction to flu shot is making me feel extra bad today.

Ali I've got to ask, WTF are you doing over at the old house, and why is whatever it was a priority over the other things you need to get done?

I am so sorry for the bullying -physical and verbal/emotional you all have experienced. It surely is part of dysfunctional family dynamics and scars remain.

ali - it does not sound silly at all for you to speak of it now. I think you need to in order to heal. Part of grieving is fully accepting the pain. It doesn't surprise me that you are tired considering what you have been through and how you have felt for quite a while. Why on earth are you working at the old house especially when you aren't feeling well, but even if you were, you need to be spending your time and energy in your own concerns. My dd had a flu shot, and then got the bug that is going around and has been sick for a week. She rested as much as she could with a family to look after.

Ali,
Nothing whatever is wrong with you, imo.
Day two of the flu shot!
Four days away from the full moon!
Still, being a voice of common sense towards your fellow caregivers!

Can you be kinder to yourself? Stay up all night if you like, eat chocolate, have a friend come over for a short visit. Order Pizza out.

You can get through this! I am sure of it!

Go back to your real home, your apt!  imo.  To echo Cwillie, WTF?  World Trade Fiasco?
When to flyhome?  Winnie the Foo?  When Turtles  Fly?

Have the pizza delivered to the new (very old) apartment!

Gosh, this thread moves fast! I need to catch up before I can post....

A pizza at the door will cure almost anything.

send - Can you be kinder to yourself? YES!, ali!!!!

Dorianne - sometimes it does and sometimes it doesn't

upset - I wish. I would probably die from an allergic reaction. That would solve some things.

Ali, have you been evaluated for chronic fatigue syndrome? And that old house is source of health problems. In absence of trust paying back money....what are you doing girl? We love you but you gotta love yourself.
My go to this week? “You will figure it out. I’m not available.”

Golden, Chocolate ice cream works too!

upset - Yes it does. I am allergic to dairy, but I have found some awesome coconut milk ice creams, chocolate included. Just plain chocolate is good too. I found a new dairy free, organic chocolate - one with orange, and two sugarless - one plain and, my favourite - one with a hint of mint. Mmmm, smooth, dark goodness!!!!! There is a good stevia sweetened choc bar too.

I can identify with your frustrations regarding a limited diet. I have to stay away from gluten (barley, rye oats and wheat), grains in general don't agree with me even those nice ancient ones, all dairy is out and I have to limit carbs, or I gain weight rather impressively. I used to feel bad about having to take pills every day - like thyroid and my CFS/FM supplements. Then I got to the point that I am glad they are there to help me, and I am good unless something puts the drug stores out of commission. ;)

You guys are lovely and supportive of one another, I guess some of you have been chatting here for a long time? I am just getting to know you all and about your lives, I am not sure what to comment on, lol! Plus I took a bit of a break from the forum yesterday. So I hope it's ok if I just say hi and give a bit of an update today. I'm still reading y'all's comments though! I'm a bit of a lurker.....

I didn't call Alzheimer's Society yet. I am going to. I have so many excuses for not doing it yet, but the truth is, I'm just so tired from processing s*** on my own....I'm not ready to talk to someone new about my family problems yet. If that makes sense.

Today was a write-off. After I got mom to dialysis, I went back to my apartment (my friend is out of town), and rummaged around till I found a pic of my dad and stepmom. I knew which one I wanted, but it took me an hour to find it. Then I sat at the kitchen table looking at it, and cried and cried. It's on my desk at mom's now. Then I decided I wasn't doing any errands today. I just drove around the countryside till it was time to pick mom up.

I feel kind of shellshocked. I dunno if that's the right word. IS there a word for the feeling(s) you have when everything you thought you knew about your family gets shot to s***? I feel SOOOO emotional, I keep crying, I barely want to be around mom. She is being fine, no more nastiness since Friday night (unless she left the poo on purpose!). But that's maybe because she's been sleeping a lot. And also, I am being extremely bland and helpful because I don't want to step the wrong way and set her off.

A co-worker once said she could tell when I was getting angry at customers on the phone, because I would start getting super polite and formal with them. I wonder where I got that from.

dorianne -whatever you want to do is fine -lurk, post, whatever works for you. Hi and an update is great. Yeah, some of us have been here a while. My idea of a thread like this one is to support one another and fill some of those needs that our dysfun fams did not fill. We are cyber sibs lol!
Not ready makes sense. There is so much processing to do when dealing with this stuff. I find it exhausting at times, and if you are an introvert, you need to draw into yourself and recover.

I am going to gently disagree that today was a write off for you. I think you accomplished a lot. You found the pic of your dad and step mum, you felt your pain and cried, and cried. That is dealing with your grief, it is healing and it is also exhausting. I am not surprised that you didn't do errands but just drove around. That was what you needed to recharge. Good for you.

Shellshocked is a good term. Numb may be another. It is the first stage of grief. You are going through a huge loss - the loss of the family you thought you had. Your emotions are all over the place. Tears are good. I used to call them years of tears, like the plug has been pulled.

Good for you for being bland to your mum. I am sure it is for the best for now. It is a fine way of coping

(((((((hugs))))))) to you Dorianne. I believe you are on a healing path.

Dori, yes sometimes this thread moves fast, other times nothing for a few days. Be careful, I am addicted to it and sometimes have trouble getting to sleep if there isn't some discussion for me to lurk on.

I have been here for five years now. I found it about a year after I started caring for my mom with Alzheimer's and her hubby general age related decline. Stepdad passed about a year ago, mom passed June 1. I cared for them 24/7 for four years until I had enough of my twisted sisters s###! That is a very long story and am trying to put it behind me. Mom and hubby went to a facility 2.5 years ago now. Hard to believe, time flies when you are trying to get on with life.

Yes, us long timers here are very supportive of one another. We put each other on the spot, we know each other well enough that feelings do not get hurt, at least not permanently. We know how to talk to each other. Now it is Ali's turn for a bit of tough love.

Ali, take care of you not the house. You will continue to feel so tired as long as you keep doing things you don't really want to do.

Dorianne, shell shocked is a good adjective. We grieve the family we have because we really lost out on loving parents, siblings pitted against each other. We grieve not having had protective parents instead of parents who ripped us apart because we didn’t live up to their image us. Give yourself time to adjust, and be kind to yourself.

Dorianne, I'm newer than most. Been here a year. My Mom and one brother were totally toxic. I took care of my Mom for about six years before I moved away. My mom ended up moving to where I relocated. My Mom was 88 with mobility issues, almost completely blind and deaf, but none of the truly difficult caregiving issues, just a toxic narc personality. She died in May. My brother was her favorite. He and his family were financially abusive to my Mom and in turn to me. He also passed away this summer. This is a safe place to vent. You can read, comment, ask questions, whatever you need.

Sharyn - Well said.

Aw, you guys are so protective, I appreciate it. I didn't phrase it correctly -- "did some work at old house" really means: I had a doctor's appointment with my psych down in that area and since I was going to be there for that, I also did 5 loads of laundry for myself (only coin op up here and I had a few loads of blankets and towels out of storage), and sorted through some tchotchkes and other things still at the house and took a carload to donation center that's a block away. I didn't mean to make it sound like I was only down there to work on the house. I was just "doing some work at old house," and most of that work was just for myself.

I talked to my psych (the man has the bedside manner of an assembly line worker, god love him) about my being too tired and not sleeping well. This is an old topic but he gives me different input every time lol. I told him it took me a long time (often 3-4+ hours!) to fall asleep, even though I'm dragging when I get into bed, and I'm tired. Lately I had a reoccurrence of a symptom that I don't recall having since I first onset with bad panic attacks: I've been jerking awake with adrenaline surges when I start to fall asleep. I haven't had that symptom in years, since the panic was quite bad. I don't consider what I experience now to be "panic." I have some physical/mental anxiety to varying degrees throughout most days, but it's not panic. Panic is what made me go to ER at times, or lie in bed with phone near me in case I thought I was really going to die. I haven't had panic like that in years, so what's with the adrenaline surges?? :-(

I personally won't take benzos every night because reasons ... and so he suggested melatonin ... (and the last time I talked about it he suggested OTC sleep aid, the time before he suggested exercise... and I appreciate that he doesn't suggest benzos... he's not trying to overmedicate me, at least.) I tried melatonin years ago and didn't think it was all that helpful, but ok, I'll give it another go. And I read some forums and others suggest ashwagandha (something else I've tried and even have some still here) and the assorted "natural" helpers.

I have been tired for years now, but the reoccurrence of these adrenaline surges is new and I'm ready to tear my hair out after the past week of such bad sleep. I'm also noticing that I almost never go w/o headache symptoms, but then I chalk it up to caffeine intake even though I've drastically lowered consumption ever since panic onset circa 2012, and I (USUALLY) won't have any past a morning cup 8oz of coffee, maybe afternoon cup of tea. I watch the caffeine because I am sensitive to it now.

I'm babbling. I'm frustrated. I'm not sleeping well. I don't know what to do about it and sedating myself isn't the answer... though that does feel AWESOME when I get some sedated sleep lol. But if I take anything then I feel like I never want to leave my bed and that isn't helpful.

Bottom line is: I'm far too tired during the course of most every day right now and then I don't sleep well, and I don't know why. I've accepted the answer that "likely it's because caregiving is stressful" and "likely will improve when I move on" for years now, but it's not Actually Happening, I don't feel improvement and I FEEL like I'm done with caregiving... just feeling like maybe some symptoms aren't going to go away, it's a new normal?? :-(

Well, no improvement yet, though I do think sometimes that I'm on my way to being a bit better. I've been tested for most everything in past 5 years. I am having some issue with high blood sugar but that's nothing to make me feel so tired like I have been feeling. PCP tested for fibro, didn't think it was that. I'm just way more tired than average person now. This isn't a new problem but much more severe in past 4 years or so, where I don't even have a few hours to feel mostly ok on some days. I feel like I'm gritting my teeth to push through most days. :-/ I really feel it now that I'm trying to get 8-10 productive hours out of a day.

I don't even know if this is accurate or makes sense. I know it's a problem. It's a problem every single day.

I'll keep reading about things to try and... I don't know. If I can't get improvement then...

I'm giving myself a couple more months (reasonably like 2 more months, until end of Jan) to see some improvement. I know I'm TRYING and I'll keep TRYING.

I'll go from there. I'm not particularly anxious, not particularly depressed, I'm just TIRED. And that tired makes me frustrated, and concerned.

Dorianne, it's more than ok to just read only and take things in... or comment only w/o reading because you have something you need to vent. This is a support thread and only you know what support you really need on any given day. (in my opinion)

Glad, I hear you. :-) But right now, there are so many things I "don't want to do." I'm trying to find more balance, and I do think that is happening. This eve, I felt it was important that I do 2 online applications for positions that looked really good (and I've been putting off these 2 applications for a week due to other stuff), and I had to go pick up my laptop by 9. And maybe flu shot did contribute to feeling lousy (I'd love to believe that's the problem but if anything it's only adding to a problem already happening with me). These adrenaline surges lately have me wondering what's going on with my body... It's not an uncommon symptom, just new again for me. And tonight I drank coffee at 7pm which I never do, but felt I just must try something to get more done. :-/ Ok, that was dumb. But you know what? It worked. I got the things I wanted to get done, done. Now I won't sleep lol but I don't sleep well lately anyway!! If all I'm going to do is lay there and wait for sleep that doesn't come, I'd rather do something, anything.

I appreciate you guys so much. My sleep is a problem. I don't think I'll know if it's CFS if I never sleep right, but it is a symptom of CFS that one feels fatigued and doesn't sleep. Even when I was working 8-5 this past year, it was a problem to maintain good sleep schedule. I feel like I'm wrestling a slippery alligator with trying to get sleep to happen on time and be restful. Blech.

I have the ride share work that allows me to get some small income on my schedule. That's been good. Plus I talk to a few people about the most interesting stuff. I feel GOOD about the ride share, I feel GOOD about steps I'm taking. Why the heck am I jerking awake with adrenaline and not sleeping??? God knows I'm tired every single day with rare reprieve.

I very seriously considered ordering a pizza... but it doesn't even sound good to me right now. Too bad for me. lol!!

Done whining. Thanks again. I'll start on some melatonin asap and cross my fingers.

Oh Ali, you never will sleep well at this rate.

If you're still wide awake one hour after going to bed, get up and do something. Read a book (and don't use a Kindle or a daylight-type reading light - see below). Take a bath. Go for a walk, if you live in a safe area. Do some yoga if you don't. But do not lie there feeling anxious about not being able to get to sleep, for fairly obvious reasons. Try again when you start to feel more relaxed; or if it's anything even approaching getting-up time then get up and don't go to bed until the next evening, by which time you should be ready to fall face down on the bed and not stir for ten hours.

The other big rule is No Blue Light. No checking your phone, no diddling around on the internet, no TV. Turn Them Off (right off. Not silent. Not stand-by. OFF) at least one hour before you go to bed. Won't make any difference how much melatonin you swallow if everything around you is telling your brain it's daytime and boosting your cortisol levels.

Ali
It's midnight and I'm wide awake
I love to sleep but am having a devil of a time - too exhausted to rest well

ABB, I think your subconscious mind is worrying about your current situation. I can't remember if you found a job, yet? Perhaps this is really, deep inside of you, is what causing you to worry. Of course, you were having sleeping problems in the previous years because first, you were caregiving your grandmother. And then your father. All very stressful situations.

I'm thinking that perhaps your personality does not allow/permit the thought that you're going through real worrying stress. That you Are Handling the situation. But, perhaps, deep, way deep down inside of you, you are stressing like crazy. Subconscious vs. Conscious.

I'm the saver of my family. I have what I call an emergency fund that would carry me over for about 1 year of very basic living. Compared to my 7 siblings, only baby sis and I have a savings account. Despite knowing that I have a cushion if something happens to my job, I still worry all the time about what will happen if I lose my job.

So, I'm guessing that perhaps your subconscious mind is worrying a lot compared to your conscious mind?  Hence the tiredness and lack of sleep?  Well, that's My Guess! =)