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Y'all, let's cut jencam some slack. Do I think she's too involved in the emotional side of her brother's situation? Yes, but most of us have been too emotionally involved when a loved one needed increasing care. Do I think she's being emotionally manipulated? Probably, but most people who need caregiving are difficult to deal with emotionally - and they are having a very hard time themselves, which really works on the heartstrings of anyone with any empathy. Do I think she needs to back off on the emotional involvement? Yes, but I know from personal experience that that is a lot easier said than done.
It doesn't cost any of us anything to read or not read her comments. Honestly, don't read them if they bother you. In the past, I've had to learn to either ignore or disregard comments by particular posters whose comments had a tendency to irritate or hurt me, but that was after I went through the angst of taking everything to heart, because I was already in an emotionally fragile state. Whatever is going on in jencam's life is causing her pain, and some of it is NOT her fault at all. Ignoring her brother will cause her pain too.
I think she needs some better boundaries in place, but I also know that she's going to have to get to that point herself, and meanwhile, we can keep giving her advice and support in a loving way. One day, something will click, but we don't know when that day is. But I believe she is trying to do the right thing, not the wrong thing.
I can relate to some of what she's going through emotionally because I guess we may be wired together similarly in some ways. I get the feeling that Jencam can only "rest" emotionally when she feels like she's done all she can do. It's easy to sit back from a distance and say "But she HAS done all she can do," when we're not faced with her brother's terrible situation.
I happen to believe that nothing she does is going to change the outcome and that her brother is going to have to reach rock bottom before he MAY (and still may not) do anything honest or proactive about his situation and then he still may never accept the reality of his situation, and he may have to be declared mentally incapacitated before it's all said and done, which is a huge hassle (as is guardianship). Once again, a lot easier said than done. One thing for sure - he is not going to go gently into that good night, and jencam and her dad are involved in this whole tragedy. Better boundaries would definitely benefit jencam but those have to be mulled over, then decided on, then built, then defended - all that takes a lot of emotional strength and perseverance.
They are sure worth it though. The inner peace is so worth it, but it's hard getting there.
Like I said, I understand the effort, the guilt trip, the empathy, the heartbreak, how incredibly difficult it is to watch someone not only lose their health and independence, but also lose their intellectual capacity and reasoning abilities. Throw in some Class A Emotional Manipulation and an elderly, guilt ridden, dysfunctional dad and wow, it's a powder keg.
Jencam, I hope I haven't hurt your feelings - that hasn't been my intention.
Nails on heads. I think I have done all I can do for the present moment. Except watch and monitor which I decided I don't want to do. Obtaining information from Bob (a Russian is expected in 2 days) but I decided I will do without it.
Asking a simple question: Is home health going to be there tomorrow when you go home to make sure you can transfer? got me this reply 'Whether I can transfer or not I am going home [crazy making statement] but I can transfer. [then more detail on that] Bob went to the hospital. He is fine now but I don't know if he can still fix my shower chair and may not even be able to let me in the house'. Sigh. Panic. Call lockmiths for quotes. Look up the shower chair. It's only $40, he has a basic one. Then anger. Just buy a new one!
The stress of all that has unfolded and 'come out' information wise recently just came to a head for me. I had a long post here that I deleted. A long email to a relative I deleted. My sister kept saying he will work it out, it will be ok.
I decided this line I am trying to walk just being kind, isn't working because of messages like that. An awful lot of the various things that have occurred recently or just made known to me recently - it was just overload.
I sent a message saying I am not mad at you, but I am over-stressed and messages reinforcing to me that your home care plan is insufficient and scary cause me panic. I have to turn off messages for a while.
I don't know if this action is right or wrong and I surely could have phrased it better, but bracing for the next message all the time, I just need a break from it,right or wrong, good or bad.
Even basic questions annoy him. Asking if home health will be there to make sure he can transfer is 'nagging'. I give him credit for not blowing up at me, but I could feel the undertone in the answer.
Sister is gone for a week and I decided to be gone too. I feel better knowing I will not hear that ping. The situation is fluid, but I feel good with this right now. Each message makes me feel like I need to DO something.
'I am bored. There is no TV'. 'You can watch TV on your ipad. You can sign in to watch every channel you have at home through your cable company.' 'I don't want to, I watch youtube'. Little things like that annoy me. Rightly or wrongly, they do. I get it. The issue isn't really he misses particular shows, so my solution wasn't a solution. He wants back in his chair with his TV. AND THE RUSSIAN WOMAN. LOL. I have to tag that on mentally to everything he says because that is what is in his mind.
And then frankly I annoy myself asking questions because I cannot stop trying to reason with him and that is just stupid. Bob has already sat down with him and told him these women are scamming him, so I do feel atm that everything that can be said has been said.
I freely admit a lot of this is ME. I have been saying for a couple weeks now 'I have to find a way not to react the way I do' but that isn't happening. I react. So, this is the only choice for me at this time. Cutting off things to react to.
Maybe the next-door neighbor should post here instead.
Do you really want a novel regarding everything I have done over the years?
Was he the one who learned everything there is to know about Trigeminal Neuralgia? Refresh my memory. Was that him instead of me tasked with speaking to Drs for brother because the TN made it so he couldn't talk? Was it him that was making all the calls, begging them to break HIPPA enough for me to know if my idea of going back to the nerve blocking shots was a good one? Would possible interfere in the failed surgery that had been done trying to solve that?
Did he pay a neurologist himself to discover this information when Drs. couldn't break HIPPA enough to tell me? Did he call Dad, begging him to use his 'release of information' to get me what I needed?
Did he finally make that call on his own, set up all the appointments, cajole brother into each subsequent one (you have to do 3-5, two weeks apart to build on each other to really work).
Was it him that instead of getting a THANK YOU, the excruciating pain is gone now! got a F YOU - you made me do those and they didn't do ANYTHING. The pain went away on it's own, and now because of you, you monster, I am broke!
(Which was not true on any level).
How many such examples would you like?
I don't go and get him dressed, fix all his meals, do all his shopping, cleaning, wait on him hand and foot, and neither does this guy. But I have taken care of a million things. Sometimes I am the only one willing to take a project like the TN one.
And I take all the obstacles that come with helping him with anything. All of the drama, the yelling, the refusal to compromise on anything or entertain even the idea of doing something a different way. Even when that different way is someone else's procedure not mine. I am just the messenger.
I think jencam comes here to vent. I think it helps her to think things through when she puts her frustrations into words. Not every problem has a just do this type of solution.
Thanks. It isn't simple at all. And there was renewed hope when sister became home health care person. The EXTENT of the Russian bride situation was not known until just a couple weeks ago. We did not know that is what is keeping him from accepting Medicaid home health.
It took all of us together piecing together different things he's said to each of us to get the whole picture. And the happenstance of Bob being in the house when I went, and willing to sit and talk for hours to get the final pieces. And relay to him some things he needed to know.
In some ways, it was like a brand new situation for all of us. It felt as crazy and jam-packed as right after Mom died and there was a scramble by the whole family to get him settled in as best we could.
I think it's human nature to want to solve something and move on to the next problem. Dealing with a protracted problem with no solutions is hard.
And KA is right. Ignoring is hard too. Has to be done for now. I was at the end of my rope.
Maybe she should do a blog. Or join the Adventures in Caregiving thread.
OK so a blog is for someone who wants to talk about many aspects of their life. Bloggers keep followers up to date on everything. I'm not blogging about my life, things going on with other people in it. Etc. This thread is solely concentrated on the continuing situation with my brother.
I have no idea what you are talking about 'joining' the chat thread. In your opinion, who should be able to have their own threads and who should 'join' that one instead?
My opinion is that anyone who wants or needs their own thread to vent, get help and advice, support, a friendly 'ear' should have one. And no one has to read them if they don't want to. Nor should I monopolize the chat thread with the level of detail that has been required lately. I will be able to only 'pop in' there with smaller things when the situation gets smaller! As I have seen others do.
I have no idea why you keep saying that. I've asked you before and you didn't answer why I should only type in there about my situation. Is there like a time frame for you? One may type in their own thread for x amount of time and then vamoose. Or are you personally the arbitrator of when a thread has gone on 'too long' and the person must stop and restrict themselves to the general one?
I'm totally lost on you saying that over and over. Mods have said NO such thing, if there is a new rule about that according to you, I guess you should take your complaint to them.
I sent a message saying I am not mad at you, but I am over-stressed and messages reinforcing to me that your home care plan is insufficient and scary cause me panic. I have to turn off messages for a while.
I don't know if this action is right or wrong and I surely could have phrased it better, but bracing for the next message all the time, I just need a break from it,right or wrong, good or bad.
.
Jen, try "medium chill" - don't let him know about the panic, he will feed off that.
I did think about him feeding off that. I thought about a white lie that I am physically very ill and turning off all messages, nothing personal. I don't think it makes much of a difference. Nothing does at this point. I'm still being kind. My statement reflects that I care about him enough to be worried but I can't cope with being worried all the time over his choices.
I usually don't read them. Today was an exception.
I asked a simple question and apparently received eight paragraphs in return, none of which actually answered the question.
I wasn't criticizing you - I'm sorry if it came across that way.
I just know what it's like to be emotionally fragile and at wit's end, and then get ganged up on and lambasted by a few, not a lot but just a handful, of people on this CAREGIVING forum. I felt ganged up on, targeted, misunderstood, misrepresented, and no, I wasn't doing everything right but I was TRYING to do the right thing, and hoping for insight and empathy from people, not snarkiness and criticism and baiting. I'm not saying you're doing that, but I am saying that I just hope fellow caregivers (and future caregivers, because for many people that day is coming whether they know it or not) will continue to cut other caregivers a lot of slack.
Most people don't really know what to do or how to react when they are faced with caregiving, and I have found that repetition is actually helpful, because sometimes a caregiver is so overwhelmed that they don't catch everything all at once. It can be a slow learning curve, when professional counseling takes time and money that many people simply don't have, especially now that they are suddenly giving a chunk of their precious time to an increasingly difficult situation.
So I was just saying "Grace. Give her grace." Or as many mothers have said over the decades, "If you can't say something nice, don't say anything at all." Unfortunately, especially in anonymous online forums, "If you can't say something nice, be cutting and clever instead" seems to be more the mode. I just think it's really sad. I'm just not stooping to that level and I hope others here won't either. It's very counterproductive.
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