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Tracy500

Active member
Joined
Jan 28, 2015
Messages
57
Reason
CALS
Diagnosis
06/2014
Country
US
State
Wi
City
Madison
I am new never did a blog. Ian a caregiver for my spouse with als. He is very mean and can't seem to make up his mind ever. He asks for something then says never mind, only for 10 mins later asks again. And then he treats me like a servant. I cannot go back to work until we hire some help. How do I deal with his attitude. Before his illness he always had a little bi-polar meanness to him anyway. He says he wants to go to bed and then I get him all set up with stuff, and then he said, " oh, never mind I want to stay up". He is like this all the time. He says he doesn't want to live here sometimes (in our home). But I know nobody will put up with him and take care of him the way I can. We have 3 young children and I have always been Super Mom, but he is being ridiculous since the als illness. Why is he being so mean to me and our kids?
 
Welcome to Heartbreak Hotel, Tracy. Just one of the 3 jobs you have is more than you should have.

First, stay healthy. Without you, there is nothing else gonna' happen.

If he's a veteran, read the sticky on the general forum, and get VA help ASAP.
 
Tracy, you don't mention how long your family has been dealing with this disease. Is there any chance that he is suffering from FTD? If so, there are people here who have exerienced that--you might want to read the FTD sub forum. If, on the other hand, he's just always been mean, argh---what do you do about that? This is an aweful disease, but for the family as well as the PALS. With three small children to care for you may have to tell him Sweetie, I have you in bed already, now I need to go do....whatever. We HATE to not give our PALS anything they ask for since so much has been taken away, but you can't let yourself be run into the ground or you won't be able to care for him. Have you discussed this with his doctor? Any chance of family counseling?
 
Tracy, I'm unclear as to whether you _have_ to go back to work. If so, start interviewing aides; the best ones know how to deal with difficult patients and some can help them be sweeter. He's not going to change overnight, so no point in delay if a transition has to occur.

However, if he is truly bipolar (and there is also bipolar depression), drugs can help and I'd get him on some or better ones. With young kids growing up, they are going to be affected as well.
 
He will refuse meds, he believes there is nothing wrong with him besides the ALS.
 
I do have to go back to work, I hold the insurance and I love my job. We can only hire someone for a few hours a day as it costs a lot.
 
He was diagnosed this past summer but was having issues for the last 2 years and didn't know what was wrong. What is FTd?
 
No he is not a vet. He is only mid 30's.
 
Hi Tracy,

There could be a few reasons for his mean behaviour.

He could be in high denial and trying to relieve the distress this causes him by taking it out on his family. Not a good thing to do, but some PALS just react to the loss of control over their lives by these odd behaviours. I personally believe this does indicate some Fronto Temporal Degeneration/Dementia (FTD) and up to 50% of PALS do have some involvement of the brain. The range of involvement runs from just a little to severe.

I think you need to have this addressed by his neurologist.

If he treats you this way, he will possibly treat paid carers this way too and you will have problems getting staff to stay if there is no diagnosis of brain involvement. If he is just simply a mean person, you will still possibly have trouble keeping staff.

My Chris had FTD, but he actually treated the staff who came in here very well, so well in fact they would not have really believed he behaved so differently when they left.

It is going to be an issue with leaving him home alone while you work, even for short times as he progresses. It is typical that he will exhibit a lot of risk taking behaviour resulting in possibly serious falls or choking.

You can read a little more about it on this link:
http://memory.ucsf.edu/ftd/overview/biology/executive/multiple/impairment
 
Tracy, even a single interview (doesn't have to be w/ anyone awesome for a test case, could even be someone you know) could suggest how he would be w/ an aide --leave them alone for a few minutes but arrange things so you can eavesdrop.

Still not clear if he has had a psych eval in the past since you mentioned BPD, but if not or he has new symptoms, he should certainly be evaluated even if only during a regular clinic visit (most have some kind of neuropsych type). You yourself can request that this be part of the agenda for the next visit.

If he really has FTD, some CALS here can speak to drug refusal issues and options, which include secretly dosing the pt. But the first thing is to understand the nature of the behavior you report. Your question was why. The next step is to answer it.
 
Hi, Tracy. I haven't dealt with this kind of behavior with my PALS. We get along as well as two people in tough situation can. But my stepson has childhood-onset bipolar. The challenges of that, and my poor responses to it, were huge factors that led to my divorce. Having lived through it, though, and had depressurized time to look back and examine, I think I can offer some lessons.

First, I empathize how hard it is to deal with psychological/behavioral issues. Even when we understand that they're a result of illness, on a day-to-day level, the behavior is hard not to take personally and react to – very hard. Looking back, I realize how poorly equipped I was to deal with his illness. I couldn't draw those mental boundaries well enough not to react, inside and out. I was over my head and didn't know it. I love that boy so much and I wanted to help him however I could, but it was out of my league.

After my divorce, things improved for him in several ways. First, I had been worn down and was acting pretty crazy myself. So my ex's decision to get me out of the situation helped him and me both. Then I think my ex cried Uncle and got my stepson more professional help. He had been going to a therapist for years, but she finally got him a psychiatrist. Meds had downsides, but they stabilized him. She also put him into a school that specializes in kids with psychiatric problems. He thrived there. He's 19 now and living a fairly normal life for a young man, whereas for a long time my ex and I both despaired he'd never be strong enough to be on his own.

Don't make my mistake and think you can and must get through this on your own somehow. First, get some counselling for yourself and some respite however you can. Maybe from a therapist or even an experienced nurse you can learn how to set boundaries with difficult patients like your husband. I know the logistical challenges, but push toward that. Recognize that you are over your head and can't do it alone. That's a huge step when one feels so responsible for the PALS. Helping yourself comes first.

Then pursue diagnosis and treatment for him, which can be challenging. Other people on the board have better ideas how to do that with a grown man than I do.

And if, after trying all you can to learn to let boundaries with him, keep yourself sane, and get him psychiatric care, it's still too much for you, then you should consider alternative care options, whether that be a lot more home health care or a nursing home.

I don't know what the right options are for you Tracy, I just know that for every challenge in life, it starts with recognizing what you can do and what you can't. And what you can't do, you admit to and seek help. Very sensible, but I also know far easier said than done.
 
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