The Caregiver & Dysfunctional Families: How are you doing?

Just be cautious, loo. Last fall my sis came over to visit mother and we had a couple of great conversations. Then all of a sudden she turned on me and was as nasty as could be. So I have cut contact, I don't want to malign your bro, but you do have a history with him, he has asked for money, and he may - may - have an agenda that doesn't match yours. All I am saying is - be careful and protect yourself. I hope it is unnecessary and wish you both well.

You're right, Emjo. Much as I'd like to think there's not a huge emotional component, there is. And I do need to keep my head on straight.

Sometimes I have to think more mood stabilizing drugs in the water supply wouldn't necessarily be a bad thing! Just kidding! No, really...

It's me, regular old Sandwich. I'm just not 42 anymore and the site wouldn't let me put a plus sign (+) next to my name, so I had to spell it out. I almost went with Sammich. heehee.

I hope everybody is really tring to take care of themselves. This stress will kill you, and that's no joke. Stay hydrated too. I won't say rest or relax because then you'd know I was from the wrong planet.

Re the ADHD thing. My son has ADHD & Aspergers. He was born this way. When he's off his medication, he's like a truck going 100 miles an hour down a mountain with no brakes. He is 15 and has become omniscient recently (lucky us) and didn't believe he needed to be prepared for a summer math course test. He didn't study and didn't take his meds on test day. Well, we don't have to be an Einstein math wizard to figure that one out. Teenagers.....

His whole life I've had well meaning but totally uninformed people tell me to just whip him harder to make him listen. I had one teacher tell me with a straight face to "please tell your son (age 4 at the time) that hitting is wrong!" Gee, what an idea! These people don't know how hurtful they really are. My own mother said to whip him harder too. Right. That always works out well. *eyeroll* Other Top 10 spectacular suggestions were to tell him what the rules are (for real). Punish him more/harder. Slap him. Spank him with a belt. Take away his toys.
When you put it in a list, it starts to look a lot like child abuse to me! I would just respond with a look or "well, we're working with doctors and therapists on this, so you'll have to bear with me if I don't beat my autistic son to death right now." That usually shut them up. At the time Aspergers was considered part of Autism.

Sometimes, if I had it in me, I'd look them right in the eye and say that my son is not a product of failure to parent. We have one of the strictest houses I've ever seen schedule-wise & rules-wise. Kids like mine require that level of structure. We have zero flexibility in our day. We can't just take off on a whim and let him sleep in the stroller because he will scream for hours on end. We can't haul him around late at night to fun things because he will be awake for 72hours+ as a result. This is not poor parenting. This is a medical problem we are dealing with. We explored parenting methods from one end of the earth to the other and the only thing that seems to work is having a schedule set in reinforced concrete. And social skills therapy. And medication to control the impulsiveness and mood swings. Like brakes on the truck and some driver's training.

I offered to let them walk a mile in our shoes, and nobody ever took me up on it. Just like now, with elder caregiving with complex conditions.

I figure these are the same people who bash our elder caregiving choices now. They are uninformed, ignornat, and inexperienced in what this can be like. But they know it all from afar. I'm going to sprain an optical muscle if I don't stop rolling my eyes.

I had a teacher tell me that he didn't move my ADD son to the front of the room( he focused better in the front) as I'd requested because "he didn't want him contaminating the other kids".???? Another teacher refused to make a few very small accomodations because she "didn't want to enable him". Another teacher complained about his getting up (1st grade) to sharpen pencils all the time - "he should sharpen them all first thing in the AM" - a 6 yo kid with ADD??? So I bought him mechanical pencils, which he disassembled during boring lectures in 4th grade to focus (of course he didn't know this at the time). That teacher complained about his handiwork - I was out of pencil options and when I asked the kid what she'd discussed that day, the little stinker rattled it off. I likened to me doodling when I'm on a boring phone call at work.

Loo, I agree with Emjo, be careful. Oh, how I wish that my dysfunctional siblings would come around, and not even help, just let me know that everything I do is appreciated. Course an apology would be nice as well. But I never anticipate anything of the sort happening. And if it started to move that was, I would not trust it at all. And the social worker/mom's guardian agrees with me. SW has been involved now for about ten months which is plenty of time for her to understand the relationships in this family, and she TRULY gets it!

Sandwich and Linda - I found that most teachers had very little understanding of the boys. Eventually, I took them for various types of testing which confirmed what I already knew. Some of the teachers were downright rude and destructive to the boys. Example - they were going to put J in a lower reading group based in his written responses for reading comprehension. I knew what he was reading and understanding at home which was way above his school grade. I also knew he had poor fine motor skills and hated writing. They tested him and found out - guess what - he was quite bright. What he had to work on was his written expression and actual writing skills. Guess who helped him - not the teachers. The poor boy was so relieved when the results came in. What if they had put him in a lower reading group? His self esteem would have plummeted and he would have been even more bored. In April they told me that he had accomplished the goals for the year in all subjects and asked me what I thought they should do with him. I asked them what he was doing with himself. They said daydreaming. I asked if he was disturbing the class. The answer was "No". So I told them to let him day dream. The other one D, I discovered in about grade 5, was an auditory learner. He was failing school, so I came home from work every day and read his text books onto tapes - even math!!! His marks jumped up and he passed the year based on the results of his final exams The principal called me and commented on it as it was usually the other way around and asked what I had done. Later counsellors told me he would do better as he got higher up in school due to more lecture based teaching. He got his best marks in college. One teacher that year called me up and told me that all D needed to do was work harder as he was lazy. I told her off and said he is not lazy, but suffers from poor self esteem due to teachers like you. I went to the principal and said I would NOT have my son in this teacher's class again (she was supposed to be his homeroom teacher the next year). She was moved to another school. I remember the year when I went to a school concert for one of them and they didn't fidget the whole time. What a relief!!!

It was a battle for the two of them pretty well through every grade. They wanted D to go the vocational route. He had poor fine motor skills too!!! I said, "No way!!!" They found out in Gd. 11 that he was very good at creative writing. He got through high school and eventually has a choice of business admin, an English degree or computer technology. He chose computers and now is a manager at the college where he took the course. His teachers would never have pegged him for anything like that. Mo

was going to say - Mother knows best!

Linda~Wow...what a teacher that was...I hope you had your child removed from his/her classroom and reported it to the principal and school district.At the end of my sons second grade year, I took him off Ritilan the last 6 weeks because he was having asthma issues and bronchitis every 3 weeks. I felt is was best to treat the asthma and bronchitis first. I did not want him over medicated. When he started 3rd grade, I had not restarted the Ritilan in hopes it would not be necessary. His teacher started complaining about his behavior so I started him back on Ritlian and the problem was resolved within a week. However, that was not good enough for this teacher...she now wanted to complain about how messy my sons desk was and could we please work on getting him to be more organized. Whether right or wrong...I felt she was now nit picking so I never said a word about it to my son. My son also wore glasses, he had several grade school teachers who refused to insist he wear them in the classroom. My son would wear them when he left home, but when he got to school, he put them in his desk. He is now legally blind in that one eye...not all the fault of the teachers...my son is to blame too because he worked the system...even though he has ADHD, he is very bright and one teacher told me...he has figured out how to get by just enough to pass....your son is one of those that falls into the cracks of the system. I wanted to wring that teachers neck for that remark. After that remark...I fell back on what the laws were for helping children with ADHD...they had to meet with me monthly giving me reports and coming up with strategies to help my son succeed!! Yes, as Joan said...mother knows best..and don't tell a mother her child is falling through the cracks...because you will be forced to fill the cracks in!!! And more rant...my son was put on a diet for allergies due to the Asthma...his 6th grade teacher refused to informed me of class parties with food my son had tested allergic too...I told her I would provide special food for him on those days including treats so he felt included and special...she wouldn't let me know...but had no problem complaining about his behavior. Ok..enough on this rant, LOL!!
Joan~I laughed so hard about your comment to ME using a 2x4, LOL!!! The first image that came to mind was the story you told about marching to a playground in in your slippers to protect your son from a bully...I could just see you smacking an adult up side the head with a yardstick...LOL!!! God Bless you for that even though I know you wouldn't actually hit someone with a 2x4 or a yardstick...but my visual was very funny!!
Loo~Good advice from others about being careful with your brother...as much as you would like a good relationship with him...it probably won't work out the way you would like as adults.

My sis responded back to my email where I said...I only mentioned this because I feel mom's money should be used for her care only. She said "Guilt is a great motivator. I don't want people to think mom is dead. I give them a gift hoping they feel guilt and will visit her." My first response was...I laughed, thinking that is exactly what mom would mom if she could. Then, I felt sad for my sister that she thinks she can control and manipulate others feelings. Then, I was angry because she herself does not visit our mom except when she has to...that is called PROJECTION in therapy.

Tomorrow is a busy day off...appts, visiting mom after Midget gets groomed and cleaning!!

Have a good night and a good day tomorrow,

Sandwich, you made me chuckle over a happy memory from way back: my good friend left me in charge of her house (my three kids and her three boys) while she ran to the shops. She was gone fifteen minutes. By the time she got back her middle boy, then aged four, and I were eyeball to eyeball in the vegetable garden and he had just DELIGHTFULLY emptied both full nostrils down his face as an act of defiance. And I'd always wondered why she seemed to find him so hard to manage...

The good news: this incredibly difficult boy is now among the most charming, as well as the most focused, young men I know; and I was delighted to give him a character reference for a professional training opportunity a few years ago. Oh my God it has been hard for him and hard for my friend, but they found a way - there will be light!

Her youngest boy was never so difficult to cope with but his interests in life are confined to pure mathematics and hiking. I love him really but the charm is less accessible :)

Sharyn, yup our sisters, and Emjo's too sound very similar in the things they will do to bring attention to themselves. Giving others gifts then expecting visits to mom to show appreciation?! Unbelievable! I am just here doing the good old head shake and eye roll.

'Morning everyone. How's your week shaping up?
Today is my mother's 84th birthday. I won't be acknowledging it-no phone call, no delivery of flowers. She's fixated and obsessed with how I took her car away, and it's all she talks about to others (and to me, for the past few weeks), so I am taking a time out. It feels good, except that I need to begin figuring out how to continue the oversight of her care without involving myself w/her at all.
I have her new DMV I.d. Card, and had planned to slip it into her wallet at some point soon, but now, am not sure how to coordinate this. I'll need to speak to her home care person (who I don't think is that effective, but at least she's dependable) and make sure she's getting more involved in my mother's care re-her meds, making sure her clothes and linens are being washed. And I'll need to schedule some dr. And dentist appts, but will need the caregiver to take her instead of me. I may schedule some time w/her doctor myself and explain the situation (or keep handing him written updates, as I've been doing.)
I'm not sure where things are w/my mother and me now. I need no contact now, but would tolerate brief visits if she stops accusing me and demanding that I return her car. I can't keep getting pulled into the same angry, useless tirade.
So, for now, I am enjoying the quiet, and planning how to change course a bit.

Loo, happy birthday to your mom. I too, would stay away! Enjoy a quiet day without balloons, cake and singing. Those are much more preferable to me anyway!

Thank you for starting this thread. It answered my prayer this morning. I have been thru a bit of a trial. In five years my mother became terminally and i cared for her. My career was destroyed in the process because as an engineer in defense we were expected to have no problems and hit the road at a moments notice but my mother was the light of my life. Unfortunately right after her death my alcoholic brother went thru organ failure needed my help and also died. I have been left with my 93 year old father, also alcoholic and as mean as his alcoholic father was. I have lived a life that only included my mother but now am stuck helping my father. The job market seems to think my masters degree and 25 years of experience just fell out of my head so my dad gives me a small stipend to augment my food stamps. He says its out of the kindness of his heart and not because i drive him habdle his medical care help me pick food eyc. I am allow to use a bedroom in the second house on the property and a little electricity but no gas so no stove oven or heat. My stuff has been in boxes around me and the stress of isolation and his constant meanness is breaking me. I got a social worker just for me because i was afraid he was going to throw me to the street in a fit of anger and i would just disappear. I am a person that is easily taken advantage of and had friends i thought would help but they were emotional vampires that had taken much from me and vanished when i needed a hug or kind word. I just dont know how long i can keep this up and with my back up my dad is able to be in his home. I tried so hard to love my mother and get away from the chaos alcohol causes

Karan, I so relate to what you wrote. I wish you could find a good job and get away from your father. It doesn't sound like a healthy situation at all. Some people can never show gratitude. Your father sounds like he is doing to you what my mother does to me. She provides two rooms for my rabbits and me, then claims that she is taking care of me. I just let her think it, since she seems to need to. But yes, it bothers me that she thinks of me like that, since I pay my own bills and upkeep. She is starting to take so much of my time I am beginning to worry about having enough time to work. It's sad to be working so hard and be appreciated so little. I wouldn't wish this on anyone. I do hope that you can get a job and get away from it. From what you wrote, you do not owe your father your sanity and life. Big hugs from here.

Karan,
Many of us relate to your situation. I too, have a Master's degree that I completed two years ago. Add to that 25 years work experience in land planning. I was laid off the first time, five and a half years ago now. The economy tanked, and there was not a need for planners. I finally found a position in January 2011, the first problem was answering a phone call from my mother, that a supervisor walked in on. Mom was asking me when she should pick me up from the airport, I lived just an hour away, by car. And she hadn't driven in four or five years by that time.This conversation was my wake up call as to how bad my Mom's memory had become and that help was needed at home for her. A few months later, having no patience for an employee that had medical issues with a parent, to say nothing of the drainage report that documented water runs uphill that I wanted corrected, I was laid off. Then we all have problems finding employment due to age alone, then add to it all the other STUFF, I have just about given up hope.

You have come to the right place. You need to take care of yourself to protect your sanity. You need to do what you need to do. Best wishes to you and hugs!

Karan, sorry your situation is so dismal right now. Can you turn your father over to the state, and let him be their problem? You need to get your life back.

Thank all of you for your support and hugs. I think one of the hardest things is the isolation and sharing and finding you are not alone isso xomforting.

I received this quote in my e-mail this morning from a relative. I don't think it is directed towards me, rather dysfunctional siblings that are making all of this so very difficult! All of us can learn from it, especially those at the end of their ropes.

"Giving up doesn't always mean you are weak. Sometimes it means you are strong enough to let go"

glad - I totally agree with that statement. The words "giving up" have a connotation of failure, but giving something up means change, and change can be growth. It is healthy to recognize our limitations and it does take strength to admit them. No one is superwoman or superman. After this last bout of the infection flare up, I am staring that in the face and wondering what changes I need to make, especially when the hospital staff have plans for me to get more involved with mother. I am having trouble right now just doing what I absolutely have to do around here, and a few essentials for mother like sorting out her change of status with the government pension people.

Looloo - I made nice color copies of mom's ID and printed it on photo paper. I cut it out exactly like the original, and put the copy in her little wallet she keeps in her walker. Her real ID card is safely in the file cabinet with her credit cards, etc.

You can also "give up" a bad habit, a bad relationship, bad shoes. Giving up is not a sign of failure. It's a sign of Waking Up and making decisions and taking action to make something else better. And new shoes.

I haven't visited mom since 7/12. Almost a whole month. Which is fine.
She has found the phone in the visiting room and calls the house, leaving messages I don't listen to. It's either angry blaming, demands for things she doesn't have room to store, or everyone's favorite: thick F.O.G.

I stumbled across a blog article (that I can't find again - of course!) that was about saing goodbye to someone close with mental illness. It's OK. We do not have to be heros. Trying to chase that goal is a fool's errand.

I think I did my part. I got mom into a safe place. I watch over her personal business. I fill out paperwork & pay bills. I'm not the traveling circus for entertainment. I'm not her employee. I'm not her personal shopper. I'm not the chauffer. I'm not here to fix everything wrong in her opinion.

Now that she is on a secure floor, she wants to go places. When she lived in an independent apartment, the good Lord himself could not get her to attend a field trip anywhere. Well, I don't have time to run her hither & yon for absolutely no reason. Sorry mom, but you missed the boat. Literally. It's not coming back.

I can't personally make up for all the events and opportunities she turned down before she had to go into nursing home care. I wouldn't want to get to that point and realize I'm stuck now and I didn't live life when I could, so I try to live now, with the goal in mind to be at peace with the big changes that come with aging. When I get to that point, I want to be able to say that I did enough, I lived, I played the game as much as I wanted to, and it's OK to get off the field now.

Karan~Welcome to the thread. I do agree with what Glad said. It is tough in the work place and jobs can be hard to come by in certain fields. I am working at a major grocery store in the bakery/deli dept. I have been there almost 6 years, I hold on this job because it is union so I have insurance. It took me a long time to get this job...I was working at a small mom and pop pizza shop. I did everything for them (the owners) and on the weekends I opened and closed the shop so the owners could have the weekend off. I worked there 2 years, went through 5 different owners in that time...I applied at this grocery store for the deli...and was hired in 3 weeks. Because of my age, I can't even imagine trying to find a job somewhere else.

Joan~You are in a position that you have to choose your health first. You already do so much for your mother.

Glad~Great quote!! Very true what Joan said.

I took Midget to the groomers this morning only to lock my keys in the car with the engine running, Whoo Hoo for me!! I had to wait for 3A to come rescue me and missed my mammy appt as a result. I rescheduled for Sept. 17th. I noticed my right rear tire had a slow leak, took the car in to get the tired plugged and they reassured me I would have no problem driving it to Idaho and back...I am driving by myself...a 9 hour drive. Hubby isn't coming out until the 29th. I have done it before so not worried.

I took Midget to see my mom. My mom recognized her this time. We went to the park across the street and sat on a bench in the shade. Lots to do and not enough time as usual...take care everyone!

Sandwich-what great mother you are to your son. Teenagers have their thoughts ...my son would do his homework..I witnessed it and even helped him...alas..he wouldn't turn it in the next day! I guess he thought he did enough.

Emjo, I'll write privately; but meanwhile big hug to you. I'm thinking 'giving up' should actually read "put it down carefully and step away."

Sharyn, exactly that thing with the keys happened to Maureen Lipman, one of our national treasure actors and writers, in a big shopping centre in London. But as she was wringing her hands and thinking heck how do I get out of this, a pair of policeman happened to pass by and with them a young man they were taking into custody - he'd been caught on cctv pinching car stereos. Happy accident: she was very well known at the time and managed to persuade the coppers to let him exercise his powers constructively just this one time - I don't know if he got time off his sentence for good behaviour and public spiritedness.

Um. Speaking for myself I wouldn't be entirely happy to drive that far on a dodgy tire, unless… no, actually, unless nothing. Would getting it replaced be a real pain?

I was 1700 miles from home and very happy not to be in the middle of my mother's issues. Then I broke my ankle and had to come stay with her. I had no idea she was in such bad shape. She has frontal lobe dementia and can't remember to even take her medication. I took her to another dr. who diagnosed her (the doctor she was seeing would not do anything), took her to get an ultra sound, eye test, MRI....etc. She can no longer drive so we put the car at my sister's house and her driver's license is being taking away. The next door neighbor had been stealing from my mother for 3 years and this all came to light. Now my mother blames me for everything and wants to fight every single day. She has said some horrible things to me (which is not really new but now she is more honest about how she feels about me) She even told me I was an unwanted child and my father was the smart one for leaving me, I don't believe this to be true but it floored me to know she would say such a thing. Who says things like that to their child? I want to move so bad and leave her here and what happens happens but I can't do it. I almost put her into a home but she is not in bad health other than the dementia so that is out. Assisted living is too expensive so I don't know where to turn. I have to go to work but I am afraid this will make matters worse because she can't just get in the car and leave anymore. I am living in h*ll!

VJohnson, yes you are. FLD is notorious for its effect on sufferers' behaviour and you're getting the full force by the sound of it. How long have you been staying with your mother?

Ok. So. Imagine you didn't exist. What would be your mother's options then?

vjohnson...I so understand you need to work! You are right to believe she cannot be left alone. ALF's are expensive but there are financial options out there. Check in to the state medicaid system see if she qualifies. Was Dad or Mom in the service? If either one did and during time of war liquid assets not over $80,000. she would also qualify for Aide and Attendance. The VA takes a while to start paying but it is retro'd back to date of application.

sharynmarie- Its so hard for us, but even harder for them, which I can never understand. Im glad he is more balanced now. As for your sis giving gifts, I also think it should be the amounts your mom would give like you said the $10-$20. But if your mom needs the money for her care, it should be available to her. Omg yes, I like the 2x4 thing she said too!

Countrymouse- I agree, best not to even discuss if not necessary.

gladimhere- Sounds like my family! Sorry you went through that. Esp Christmas time. And I know Im not your sister, but I will tell you your doing a wonderful job!!! Hang in glad, we are all proud of you!!!

looloo- Be careful as emjo advised, I hope he has now grown up, but still be careful I really wish you both the best. I know the relationship will never be as it was before the age of 9/10 as you said, but, if possible a nice one. Also, Im sorry you and your mom are still not getting along. I hope she will soon let it go, which I think she will. Good luck Hugs

emjo23- Its scary watching htme go through so much when their little and all we can do is keep everything crossed and guide them to succeed. Im still scared but am hopeful. Both of my kids are very smart.. and no, not just saying that because they are my kids( well, what mom doesn't?) But they are, and my son once he is calm enough to sit and do the work hes succeeds! The violence part.. working on. Im so happy for you and your kids that they are doing well, your another wonderful "happy ending" on here, that our kids will be ok!!! I am glad your lunch went well and the kitty is doing better. You also take care of yourself and be careful of the heat! I really prefer the 70's, sometimes 80's (with a breeze) temps, Hawaii to be exact, maybe one day I will be able to spend at least a year or so there!

sandwich42plus-I have heard the same thing, to slap him accross his face, whoop him ,take a belt , etc.. Ughh makes me sick and I ask them you want that done to you? Yes, we have spanked him on his bottom, with only it making it worse. I never cared for that anyway, spanking makes it worse even for a child with no issues( my personal opinion) Yes, I was spanked as a child!!! Im glad your rules and structure is working, Im hoping to come on here soon and say, "it finally worked for us" One day? Anyways I get exactly what your saying , even if we let on a whim, they would expect it again, son esp and when we couldnt when he wanted to, yikes!!!

Linda22-Omg Linda, thats so sad :( Im so sorry. Hopefully that teacher was fired!

KaranM- Welcome and Im sorry for your losses. You have been through a lot and the job market is horrible as well. I understand being financially depended on someone, esp family. Its never easy. Im also easily taken advantage of, but you need to start worrying about you. I know, always easier said then done...but we are here to cheer you on!!Hugs

sharynmarie- Im glad she recognized Midget!!

Countrymouse- Hugs and hang in there, we are with you!

vjohnson- You need to worry about you. Who says hes not bad enough to go to a home? Have her checked and let them know you cant handle it anymore. Hugs to as well!! Sorry your going through this.

ReneaP1960- Great advice !!

****Well my grandpa shocked us and said hes leaving us the house directly for all we done and to make sure we all have roof over our head and are not stressing out the rules I was given by Aunt. We will see if it holds up. I kept thanking him and well, I mentioned all this in another post floating around. But basically, it went back to " clean your house and you have to look for a job" ok!! Well, today, after he knew I had plans to take my daughters dog to the Vet in the morning,shop for a mattress for him, other appts/places needed to go and FINALLY clean my home( believe me it needs it and sounds dumb but If Im not going full speed ahead no breaks, I never get done what I need to).

Well anyways, a month ago he hired a friend/neighbor (who is the one who said Im not doing enough for him.. I should work after he dies, she agrees with my Aunt etc, to clean certain rooms.) He didnt want to bother me. I dont mind a little everyday or night( Im there about 12 hours a night I can most certainly clean) SHE alone was to clean, all of a sudden he TOLD me Im cleaning something in the morning while shes doing another part. Then, he added" Oh Im having you and her paint those rooms tomorrow too!!!) I have to move furniture, expensive collectables, paint, work next to someone who doesnt like me but at least we are on speaking terms .( Im glad about that tho). Ummmm!!!!PLUS my son is still home from school and he insists I have to help ( I get by on painting, Im not as good as her or him) And he went on how hes blind but yet can paint the whole room perfectly etc etc!!! He says I always say Im too busy for HIM!!! Really??? I jump as much as possible, all the time in an emergency!! My kids start school Monday, I have a lot to get done myself to prepare them, and get my house done! I dont mind helping my grandpa, and yet, I know I owe him for all hes done and the future houese, but still, I need to handle things here too!! This is more of a pain then anything!!! Here comes the old ways.. again, how can I work if this is going to continue. Im scared if I dont jump he will change his mind, but, Im going to take that chance!!!

I decided to try quantifying the actual amount of time I spend on my mother's stuff, so I downloaded a timesheet template in Excel format, and have been putting in the time spent, with a summary of the stuff I've been doing every day. I knew it was a lot, but holy schmoly. And this isn't even hands-on caregiving. No wonder the days and weeks are such a blur sometimes!