
Many of us, myself included, come from a dysfunctional family which adds a lot of weight to the challenges of caregiving. I have read stores on various threads on other topics and decided it would be good to have a thread just for this topic for people to share, vent and discuss.
The idea for this thread originated on the thread named "The Caregiver....How are YOU doing today?"
Glad, how is kitty?
Golden, you are such a go-getter despite health.
Barb, how is work? I think of you when son talks about the disability services folks and their overload.
Ali, is the Trust Officer still dodging you? I recommend a certified letter after you call and ask for "Agent of Service" at the trust offices. That signals possible lawsuit without you actually saying.
Sharyn, hope your knees improve - mine are awful this year.
East, just say no to the Master Chef. Your bro can cook. Skip Hell's Kitchen:))
Duck, remember you matter too.
Stacey, badbro can't manage to maintain the fiction. Narcs and liars can't after a certain amount of time. I'd doubt the surgery was ever scheduled since they waited so long. Bank account lack is probably due to overdrafts - he CANNOT open an account at any bank without triggering a lien of some sort. Or legbreakers:)
CM, as always. I'm binge watching Worricker Trilogy over here.
Bill Nighy always gets me for some reason...
We are currently off hook for Thanksgiving. We go out of town on Thursday AM driving to see son. I prodded husband into calling his parents to advise we were not available. He got MIL who was lamenting her lack of visitors, holidays alone, etc. His mom.
My best wishes and love to all of you - if I forget folks, not because I don't care but because boss walks in:)))) Break done.
New Trust Officer is "ghosting" me, just not responding. I'm not sure what I'm going to do. I'm probably going to do nothing, and get on with my life. I just wish I would have this bit of "closure" so much. It would be SOMETHING after all this heartache and illness and work.
The Trust language states the Trustees/Trust Officers can disburse funds as they see fit, it's discretionary. That pretty much means they can do whatever they want, according to attorneys who have weighed in on the matter.
I've already accomplished everything they need for sale of house, pretty much. There is a wicked part of me that wants to go take the lockbox off the house, take every key to every door, and tell them they can replace the locks or TO can communicate with me and tell me what the heck the status of my reimbursement is. Even if I did have the guts to pull off such a move, seems it wouldn't work in my favor somehow.
Just needed to whine. I have so much ahead of me, so much work to do, but it would mean a great deal to just be able to wrap up things on some kind of not-horrible note. The Trust has "permission" from my dad to pay me. That's not an issue. I don't know what's going on.... :-(
Ali, I'm so sorry the Trust isn't responding the way it should.
Stop volunteering. I am not clear why you are the contact person for the contractor and not the trustee. The trustee gets paid a percentage of the trust for their work - let them earn it and step away. Unless you have a contract, I would not do one more thing. You can tell the contractor that until you have something in writing from the TO that you cannot authorize any more work.
duck - so glad your mother is better towards you. Stepping back - detaching changes you more than anyone else. It is done to help you, not to change others, though some others may make some changes. Heal yourself.
guest - I am glad you are sticking to your realities. E will have to find ways to manage. As it is you are doing a lot for her. Her money, or lack of it is her problem, yours is yours.
stacey - hope Bb and his games are behind you. Yay the carpet and lino will be done by Dec!!! I am happy for you that you are getting excited about Christmas and also that you are feeling better. Let us know what the cardiologist says.
ali - Trust really is the pits, but that is nothing new. Why are you doing what the prop manager tells you to do. It is not your job!!!
" I'm tired of feeling used by this situation and... really, there is no guarantee that it won't end up playing out where I'm giving until the very end, and they never give me a dollar back" Feeling used???? You are being used, but you don't have to agree to be. They will use you as long as you allow them to. You are the one who has to put a stop to this, as others have suggested.
" I WANT a reason to leave this all behind me. I sure wish they'd give it to me" Honestly ali, I think they have given you many reasons to leave this all behind. Think about it. What you are doing now isn't working so maybe something more drastic would. If i were you , I would not do another stick of work until I had some money in hand -and I don't mean a promise of money. Set some boundaries!
cm. glad and upset - excellent suggestions
I failed my rideshare car inspection today because I need to get a tire put on. That's no big deal but it will take time and I really want to start earning some income, no matter how small. Today just really sucks. I'm trying to keep stiff upper lip, chin up, all that, but... yeah, well. Nobody died.
Man, seeing that you owe $3k from out of NOWHERE when you're unemployed and on a strict budget and can't get reimbursed from Trust... well... it's not the best timing, but whatever. I'm on hold with IRS right now, going to try to make some sense of why I'm only NOW seeing this unpaid tax bill from 2007 when they've darn well known where I lived for the past 10 years....................................
Thanks for the sympathy about Trust. I sent a one-sentence email today asking for an update. It's been a week since last 3-sentence email asking for update.
I'm thinking it might be a blessing that things are so tough. I don't know HOW, exactly, it would be a blessing, but... may make me get priorities in line and simplify some things.
You cannot make your mom happy -- I kid that only a time machine would make my mom happy because she wants things (and her health) as they were 30 years ago ---- wouldn't we all? At some point, what we used to do on holidays must change - we just can't keep it going.
Take a big breath and continue with the plan to relish being a mom and grandma. And if you need a big dose of backbone, just think of how happy this will make your husband -- no cooking and cleaning -- just being Grandpa.
I don't know how you keep patience with such a person.
East, For what it's worth I think you're right about Thanksgiving. Enjoy your day with your family and no cooking. Don't let your cousin guilt you into going to your mother's. I let my mother dictate my holidays for years. My oldest grandchild is 12 years old and I've never had a holiday with just my son and his family. I wish I could go back and get some of those holidays back instead of having my mother's holidays her way. Stick to your guns and enjoy your family.
YOU are allowed to say "no, I don't care to do that".
Yes, your mom could die tomorrow, or next year, or in ten years.
Some members of my extended family rushed to various homes because "this is x's last Thanksgiving/Christmas/Easter/Roshhashannah".
I always told my kids to show up when they were able to and when they wanted to enjoy an afternoon with their grandparents.
None of us have any regrets.
guest - the gall is unbelievable!!! Glad you got your Thanksgiving sorted out.
ali -what surprise said!!! I am so sorry about the tax bill. When it rains it pours. Hang in there. Better is coming.
east - Your cousin needs to keep her nose where it belongs. Yes. let her cook the turkey and make your mother happy, if it is so important to her.
Combination of busy and dealing with an allergic reaction here. I had got some vegan protein powder which had all kinds of plant ingredients in it and I guess I was allergic to one or more. Sinuses are finally settling down from that hit.
Mother's NH has lost the hearing aid batteries I had sent there. They recommended using amazon, which I dId and got a notice that they were delivered Oct 25th. But no one knows where they went! So the NH as asked me to contact the courier and find out who signed for them at the NH. Obviously their system is flawed. I will call someone there tomorrow and put in a complaint. They should buy mother 60 batteries if they have lost the ones I paid for. I have heard nothing from the courier co. about my request for info.
Yay I have another date for the second cataract op - Dec 8th. I am trying to coordinate that with NH meetings - one coming up (an orientation,and not absolutely necessary) and one TBA (case meeting and necessary), and viewing condos. We will get it figured out!
Went to the eye guy to get the new lens ordered and the gal said there was a large positive difference since the cataract op. That was good to hear. The new lens will, come in about 10 14 days. I may stay here until it is ready, as I will need it after the second surgery. This are my bionic years with implants. hearing aides and plastic lenses. Moving on ...
Lost a couple of lbs from the exercising. Usually I put on weight when I exercise as I put on muscle easily, so I know I have lost some fat too, (also from how my clothes fit). My weighted vest came today. The box was heavy with all the weights. There are pockets in the vest to put the weights in - back and/or front as you wish. To begin with I will just wear the vest which weighs a few pounds itself, then gradually - very gradually, add weight. One benefit is that grocery shopping and housecleaning are easier, as my back doesn't get tired from lifting and bending. :)
Take care all and be good to you. Self indulgence is about feeling good for the moment, but brings regrets later. Self care is what makes you feel good about yourself over time.
Good news about the tax bill: I called and talked to a rep, she explained it's not a new bill, but that it's currently in "uncollectable" status, so no interest or penalties, and that's a good thing for me. I can deal with it down the road when I have means to deal with it. She had good advice for me. If one is going to owe back taxes, it's best to have good advice to go along with it. I'll file some forms and get on track to get things handled in best way I can.
I'm dealing with things best I can. I'll make it one way or another. And I find new opportunities and meet new people all the time. Just wish the Trust had the guts to say - "We're not going to reimburse. See ya." And they won't say that. They'll let me twist for months. This has been happening all throughout this caregiving experience. Just sucks. :-(
Upset, I'm sorry about your aunt's death and resulting dysfunction. DYS families never stop, do they...?
Today we had great news at the center. We got grants for three of our caregivers to attend a home caregivers class. It will pay course fees, books and best of all the cost of a caregiver for one of the women while she is attending class. Once they complete and pass exam they will be eligible to be paid for caregiving duties in including Medicaid home waiver clients. Two of the women recently lost their mother's and need to get back into the workforce.
Our quiet nap room continues to be one of most popular activities. We had manicures and pedicures today. Next week a guest exercise instructor and a yoga instructor. Looking for a meditation person. Several people have indicated an interest in a meditation class.
ali - it sucks. Time to pull the plug!!!
guest - love the phrase about pounding salt
upset - the center is working so well. I am glad some can be paid for caregiving.
nature - good idea
Finally I think I have recovered from the fire, the evac and all the events that transpired afterwards. It came to me yesterday. Some of my peaceful feeling may also be due to taking more resveratrol, as it works to calm the brain inflammation which is part of CFS/FM. Apparently CFS/FM is seen more often in those who experienced emotional trauma as a child and therefore freak out more as adults. Parts of the brain that register emotions are parts that are inflamed. So, my new tool for evaluation of a situation is to ask myself if it is worth injuring my brain over. The answer most often is going to be "No". That may mean walking away from a situation, or may mean simply letting go and letting God more in the situation, and do what I have to, to look after myself. It feels good.
I am trying to pace myself, allowing myself guilt free downtime doing something I enjoy and letting the cares and the responsibilities of the world waft by. I may pick a few days of the week when I do not answer the phone to anyone, and just check the voice mail if it is the NH or etc. Feels like some kind of freedom.
I've thought about this very thing for many years, first beginning with how they handled the bad things during my grandmother's decline and death.
I asked a good friend about this last night, my ex, did he think going this route was a good idea. Right now, I don't know. The thing is -- there is enough bad, neglectful stuff they've done, and there are local watchdog groups just for elderly trust fraud and related issues... and it would probably help me to feel better if I would organize my thoughts, my major points against this bank and how they've handled family issues and wasted funds on all the wrong things, wouldn't spend for the right things... And maybe I'd feel better if I recount the situation and put it online on these local watchdog groups' boards. If nothing else, others would know they aren't alone. There are similar complaints, even against this very bank and the old Trust Officer who just retired, already online. So... yeah... maybe when I'm a little less fragile, it will be time to talk about all of this. In Chicago, a story like this won't really get much interest except within the local groups.
Just facing the day as best I can right now. :-) I'm so weary and I want to focus on things that put some life back in me. The situation I've been through with this Trust, with caregiving to a mentally challenged dad who couldn't help me fight them, I'm worn out with that right now. Enough for now. I'm going to give myself a few days, at least, to accept the idea that this is going to end just like it started: badly.
Thanks for letting me vent about this lately. It's hurtful.
Hey all, I had a first date tonight from online dating site. I probably didn't need to do that in the midst of grieving and PTSD and major anger and all the emotions lately but... I also feel like... I want to do some small steps for new things, and I've sat home and nursed myself for as long as I care to. I don't know if healing works like that, but I'm telling myself that it does for me right now.
Date-guy tonight was 2nd guy I've met in a week who pitches the "I'll take care of you and all your problems, I've got your solution" stuff. I don't take it seriously, how could I, but it's weird. (Thing is, I'm not looking for an instant "solution" either, or some codependent thing... just weird.) Either I meet guys who don't seem to have a clue how much this situation has affected my life or they think they're the solution to all my problems. Either way, they don't get it, and how COULD very many people get a caregiving situation like mine, or just caregiving full time. Unless you do it, how would you know.
I do 2nd ride share inspection on my car tomorrow and then I can drive ride share service. A couple of friends have said they think it's a good idea for me right now and I agree. It will be some amount of income I can make on my own schedule and I'll meet tons of people. I have to keep looking for long term employment in meanwhile but I can be more selective if I have the ride share money coming in. I'm not doing very good on that front, about keeping after full time positions, and I have to read more about keywords for present-day online application process. I haven't written my resumes (plural, because tailored for different industries) in the way I need to to get more interviews per application. I need to make it a priority but honestly... I know I'm not ready, mentally and emotionally, for some of these jobs. I'm trying. I said I wanted jewelry sales and I definitely do, but I also want to interview for some elder care facility sales positions, too. Or hospital (foundation or other non-medical) positions. Health care is a great industry and I have elder care and business development experience. I don't know. I want a little more time to sort it out. But holiday time is here and temp retail position would be good, but same money as ride share and the ride share is something that will allow me to take a day off if I really, really need to because I'm just not doing that good that day. And I think I need to do that for right now.
I currently have the large majority of my 25-30 handbags in the dining room, going to take in to a consignment place to sell off. I have so much STUFF... some of them are high end designer leftovers from a life I don't need or even want anymore. Does that sound uppity? I had disposable income, I bought nice trinkets or exes did, and I just don't even have the space for all that STUFF anymore. I can't wait to downsize it all. It's difficult to do the mental work of clearing things out, but I won't miss any of the stuff once it's gone.
I'm not doing all that good right now, but I feel like if I just put one foot in front of the other right now, somehow things will be ok. It's actually very comforting to be in the middle of all these people in the city right now. :-)
Yeah. I'm having a tough time but I've got this One Day At A Time thing down by now, and I'll keep stepping. No self pity (sure try not to), just some heartache that goes from "I can do this, isn't it great to be moving on" - to - "this pain is too much" every single day lately, up and down. Appreciate your prayers, thanks. ((((hugs))))