I'm bad for his health

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jayswife

Active member
Joined
Feb 11, 2016
Messages
71
Reason
CALS
Diagnosis
04/2014
Country
US
State
ct
City
stratford
Last night I rubbed his feet and shoulder blades with peppermint oil and then I rubbed his head and face and told him I love him. His response was that we need to talk because this house isn't good for his health. I told him I didn't understand what he meant but he told me I do know what he means. So I asked if he's referring to me and he just looked at me and said he's getting frustrated and tired and doesn't feel that I can take care of him the way he needs me to. Basically he wants someone to sit next to him 24/7 which can't happen. Earlier in the day he told me that his legs wouldn't be so bad if I would have worked with him more.

His constant negative comments about me is getting hard to take. I feel like curling into a ball and not moving for days.
 
Hi Jayswife, I would suggest that you and Jay see his doctor, possibly a mild sedative would work. I know at one time my attitude was not good and we went to see my doctor and she gave me a prescription and now things are much better. Worked for me and now we are both happier.
Al
 
I'm so sorry, that would feel just awful to have that said.

Regardless of if he is depressed, has some FTD or is just a mean person, for your own sake this needs attention.

I agree with Al that you need to tell this to his doctor. Sedatives are not the answer, but an antidepressant may well help a lot. (maybe that's what Al meant too).

You might decide to contact the doctor in advance and get the doctor to bring up the discussion like it is part of the routine. It may be way too confronting to 'accuse' him and cause him to just be defensive. If the doctor asks him questions it could lead into discussion and help.

On top of this, you need strategies to help you cope with the behaviour and he needs help to learn that it is not OK to blame you. This could come from a counsellor, even if you just see someone.

My husband had FTD and I went through so much of this. I learned strategies that really made a difference.
 
I am sending big hugs, it absolutely awful to have all the things you do for him put down and no one should have to deal with this kind of constant ongoing pulling apart of their self esteem. This disease is horrible enough without the mind games. I hope that you can get some help from his doctor in trying to find some way of alleviating his problems. When things got too much for me I started on the anti depressants they have really helped as has counselling

Not everything should revolve around the pals, and I am one. Your health and wellbeing is just as important as his, your needs and wants are just as important as his, as a Cals it is so important that you protect your long term mental health. Is there any way you could get any respite care? I sincerely hope that you can at some point.

Wendy
 
We have discussed the loss of empathy with others and issues of cognition that can lead to faulty cause-and-effect conclusions. I don't think of it as "mind games," as much as changes within the mind that can be fairly attributed to the disease, either biologically or as a consequence of the loss of function and independence that it brings with it.

Best,
Laurie
 
And we should continue to discuss these changes as each person is living their own version of the horror and I would encourage you to talk here and keep discussing.

Whatever we may label it - mind games, mind f*(king, abuse, being an a$$hole, it feels how it does and it is a real part of what we are going through. Every PALS is different and how they respond to disease progression regardless of fronto temporal involvement or not, it is going to play out differently depending on the type of person they were to start with. Yet we see so many similarities too that we can empathise and understand xxx
 
I think you are spot on Tillie, it does not matter in some respects if it's mind games/ manipulation or FTD or an emotional result of having ALS. From the CALS perspective it's still hellish.

Even with Brian, there have been occasions where he definitely took it out on me. Fortunately it is not often or a pattern of behavior, but still no fun at all to bust it all day on various tasks only to hear " you can't even do laundry". If that attitude were a regular thing I would find it very difficult regardless of the cause.
 
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