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GH23

New member
Joined
Dec 26, 2012
Messages
1
Reason
CALS
Diagnosis
10/0000
Country
Ire
State
Limerick
City
Limerick
Hi,

My mum has been diagnosed with ALS for 10 weeks now, and in this space we have gone from being relatively mobile, able to go up the stairs slowly to now where we have a stairlift and all movement outside the house is in a wheelchair. It is progressing very quickly.

I have noticed some behavioural changes in my mum. For instance, it is difficult for her to get up off a settee, and even though we have offered to get her a new armchair she refuses to listen to anything we say. She now sits on a roll-ator which has no back support but she steadfastily refuses to change absolutely anything. Her partner left her during this time as he could not handle her abusive and dangerous behaviour. I saw how she picked every little part of him apart and the mans blood pressure wasnt able for the amount of stress imposed.

This anger has now turned on me, as the primary care-giver. It is the exact same process, picking every little thing I do, demanding one job and while you are doing that you are requested to do another one and shouted at. It is very intense. Its as if all the problems she feels are being taken out on me. I have been called every name you can think of, I am gay and have been called a pansy, a ******,a bastard, that I talk like a woman etc etc etc It is extremely vindictive and hurtful and it is intended to be so, but there is absolutely no empathy. It is progressively getting worse, just a few days ago she threw a phone charger across the room. I am constantly on edge, I have addressed it with my doctor who is helping me get through with medication.

I have researched the symptoms and I am really worried that FTD may be involved. I am engaging with the health care proffessionals but she thinks that we are speaking behind her back and has demanded everything goes through her. (Even though she refused to engage with them at the beginning and they had no choice but to liaise with me ) Now I feel that I am being abused by someone suffering from a serious disease, and my options for support are not available. I was not allowed to meet with the MND consultant at our last meeting so I have now been pushed on the outside. Again, this is similar to the behaviour with her partner initially.

Can I ask if anyone has experienced this kind of behaviour? I do not respond to arguments and walk away, but there are times where she is so worked up I cannot come back into the house. I try to disengage but she will push and push and push. I suggested a while back that she should try a course of anti-depressants to lift her mood, we want to spend quality happy time together, but she feels that tablets are for failures, even though she is obviously severely affected.

Any advice, tips, etc would be great. Every day is a living hell, i care for a 90yo grandmother part time, as well as take my 13yo son, Im just not able for the abuse :(

GH
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,560
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
City
San Jose
I'm sorry honey.. but it sounds like your instincts are right. My best suggestion: Contact the doctor by phone if you can, or by e-mail (which is an easy way around privacy/confidentiality concerns because the doc doesn't HAVE to respond). Explain your concerns... be clear about the lack of empathy. I wish I could say there are medications that would stop the behavior... there just aren't. But there are medications that can make it easier and more bearable for you. You may have to tell her they're for something else... but it's worth it. Good luck and please let us know if you have other questions.
 

patgayle

Active member
Joined
Sep 20, 2012
Messages
60
Reason
Lost a loved one
Diagnosis
05/2012
Country
JAM
State
Westmoreland
City
Negril
My husband reacts the same way as your mother, I have been called everyname in the book and am generally reduced to tears daily. Maybe I am fortunate that he has no use of his hands as I am sure he would be throwing things by now. Upon waking he is in a panic," get me up- get me up" - as if he had been asking for ages - everythings is a rush and if I dont react quickly enough, he throws a fit, anger and tears. This bad behaviour is not something that lasts all day, worse at night and early morning. Often he doesn't have any understanding how long he has been lying down and will wake up after 2 -5 minutes after being put in bed and demand to be put in his wheelchair. No matter how you tell him he just lay down, he wont listen and then the anger begins. Good luck with your mother she's not the only one who has lost their sense of proportion and decency.
 

themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
There are medications that will help with the FTD. My PAL experienced alot of rage and anger in the beginning...They don't even know that they are acting crazy...so try and take it with a grain of salt. AND talk to the Dr. Get a psychiatric exam - they can issue meds that really helped Michael...Sorry it is hard for you. You are carving out a small piece of heaven for yourself taking care of a PAL with FTD. Its hard. I know. Hugs to you....
 
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