I was asked to repost this reply as a stand alone.
Hope that's OK.
A little hubris? ouch!
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The limbic system is the same as the endocrine/pituatary hormone system in my previous post.
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"You are not alone on this care / guilt thing. Its fairly universal Though some of us feel it more deeply. It hammered at me for a while. Dreadful feeling. You must love your husband very deeply.
We are deeply 'programmed' to care for those we love who are vulnerable. This is rooted in the Limbic System (emotions and primitive drives etc) which is not subject to the reasoning mind. It is subject to other forms of learning though and so its responses are open to modification.
As we have progressed technologically and the extended family is, to a large degree, fractured in terms of group care and support, then care is thrust onto one or two individuals. That burden of care very often exceeds our limits and we are forced to resort to Nursing Homes.
The Limbic System does not 'understand reason' and so it is that many of us, including myself, feel guilt. Guilt is one of the limbic system's sticks it uses to try and correct us. It is trying to make us do the caring for the vulnerable loved one. This is a very deep drive within us. Functionally one might imagine that it's ancient role is to keep the 'group' viable and intact. This system of 'thought / behaviour' was there long before we developed a cortex with higher level thinking.
My solution for my guilt is to see Liz as often as I can and to do the most I can for her.
Most of the time my limbic system is assuaged by this. If it gives me too hard a time I sit and contemplate all of the good care and those caring for her as well as my visits to her. Gently push away any doubts or guilty thoughts and re-concentrate on the good care and love. It's like a lullaby to the limbic system. Gradually the guilt diminishes as that more primitive part of my brain learns that there is no issue.
(This is a third wave cognitive behavioural psychology approach)
That works for me, but we are all a little different.
I do hope this helps a little.
Just keep reminding yourself you have done what you can and that he is getting care you would not have been able to deliver."
Hopefully useful
Best
Kevin
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Kevin_1
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Thinking the limbic system may also be responsible for my 'inner mouse' approach to life! And my determination to do things myself and not to ask for help.
Have a mess in my rooms and family coming to dinner which we are cooking together.
Maybe this time to get that mouse roaring and to ask for help ! ?
Kevin, you are always thought provoking, and give great advice to those in UK and all over.
Thanks Kevin: I found this so interesting as well as helpful. It makes sense that ancient pre-cortical systems would have operated to keep early humans safe - and that those parts of the brain are still operating in a very deep way inside us.
I feel strong sympathy with those who have wrestled with the awful conflicts of exhaustion, duty, love, capacity, safety, anxiety, and guilt as they consider the best level of care for their loved ones. Any one of us could be there.
I do worry that I bang on sometimes and two long posts on one day felt a little excessive.
I hope things are getting a little clearer re. your husband's diagnosis. The eight year old in me is shouting that its so damned unfair to have a serious illness with two young children.
Thanks, I was meaning to post an update on the diagnosis, but instead, we are waiting and waiting. It is killing me--I keep telling myself to not have all these emotions as though it's the worst-case scenario, but guess what?! it's a lot harder than it seems from the outside, as I know you (and all the others here) know.
In the meantime, his symptoms have gotten worse in one month: his hand is in a weird position at rest, his fatigue is crazy. So I'm scrambling to work around his being out of commission for an extra hour or two a day. . . how on earth can we cope when things get worse? But a day at a time, I guess.
You will cope. When I started on this unplanned road I read other posters and thought, "I could never do that." After a while and with the support I got here I gradually came up to speed. Most find it is like this.
You are in a difficult place of not knowing the diagnosis, having to cope and probably, if you are like I was, not being sure what to do.
Tough spot.
The first months are in many ways the hardest. If things continue to deteriorate you can respond at each stage to those demands by getting care well organised. After a while it gets much easier. Putting the heartache and loss aside for a moment, it's just learning another skill.
You do appear to be on a path of increasing care demands and you can prepare for this.
I am unsure what country you are in so I can't post focussed info.
Having said that:
Prepare for needing to give up a lot of other demands. Some people still work whilst caring, but they get a lot of care bought in.
Prioritise things you must do and think about ways of meeting those demands through other routes to leave you more free.
Do get in as much clinical and care support you can. You're in for the long haul and you must think ahead and preserve yourself as the one person who holds it together.
I'm a bit stuck here as different countries have different systems.
Putting you post as a stand-alone naming you country will enable folk to step in with focussed practical advice.
I would finally add that at first it all feels terrifying to most of us. Get that behind you and you will most likely find it totally do-able. But yes, still tough.
None of us chose to be on this unplanned road, but with practice you will be able to walk it.
The precise diagnosis will follow in time.
My heart so goes out to you all.
Make use of the forum... there are good people here as you know... and nothing is too odd or too silly to post.
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Sending warm wishes to my friends 
The end of PSP journey
Guilt is to the past As Worry is to the future 
Wind and more wind 
