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mimipgm

New member
Joined
Nov 2, 2011
Messages
8
Reason
Loved one DX
Diagnosis
09/2011
Country
US
State
TN
City
Springfield
I am so confused. hurt and honestly, a bit angry. I have been going down on the weekends (120 miles) to stay with my mother to give other family members a break. This weekend, it seemed like I could not do anything at all to make her happy. She seemed mad at the world and was so hateful. She has a lot of company which made her nervous and I suggested her allowing me to put a note on the door letting people know she was resting (but thank them for coming). She was adamant that I not put anything on her door, but yet complained constantly about how people were "worrying" her. I bought her a very expensive heated mattress cover thinking it would perhaps make her muscle cramps better, and she told me she didn't want it and to just "take it back where I got it". I worked so hard cleaning, ironing, doing laundry and cooking meals for she and my dad to have this week and she even acted mad about that. She had also told my daughter last weekend when she called and told her she was going to drive down to see her that she didn't want her to and for her to stay home with her own family. This was extremely hurtful because my daughter adores her grandmother and only wanted to spend time with her. After such an emotional couple of days with her bitter attitude, I left late Sat. night after I had all I could possibly take. I did let her know that I was doing all I could to make it easier on all of us, but I just couldn't take her jumping down my throat about each and every thing I did or tried to do. I also told her if I could trade places with her I would do so in a minute, but I couldn't. I have felt awful ever since, and wish none of it had happened. She is consumed with bitterness and takes it out on everyone. Does this go with this disease? Could someone please advise me on what I should or shouldn't do in the future? I love her so much, but I am not responsible for her getting ALS. HELP, please!
 
Not really but there is something called FTD or Frontal Temporal Dementia that sometimes will accompany ALS. Or maybe depression. It sounds like it's not personal. I'm sorry you are going through this. Can you talk to your Dad about your concerns?
 
My dad walked me out to my car and helped me get my suitcase and other items in. We were both crying and she was looking out the window, so our talk was very brief. She listens to EVERYTHING anyone says and comments on it. If he is on the phone and tells anyone that calls how she is doing, she goes off about that as well. It's a no win situation right now. One very important comment that she made that I failed to mention was that she informed me over the weekend that there would be no Christmas and for my sister and me to have it with our own families and not plan on doing anything with them. What a slap in the face, but those are her wishes, and they will be honored.
 
Does sound a little like depression. Has your dad mentioned her behavior with her doctor. He would be your best ally
 
Your poor mum has an enormous mountain to climb, she is no doubt angry and extremely frightened. Many people faced with a terminal illness, go through a long period of anger. It's hard on the family, but even harder for her.
Keep your heart soft and gentle, take deep breaths and take a walk when it gets too much. Most people do get through this period in their own time. I think it's very difficult to comprehend if you are not the person who is ill.

I would explain this to my daughter as well. She has not lost her loving grandmother, she will be back when she is ready, right now she is confused and depressed. Treatment for her anxiety is important, so if someone can encourage her to get help, that would be great.

Your mum will come back to you.
 
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I agree, I have noticed myself snapping at loved ones that don't deserve it.
My wife has to put me in check to remind me that everyone involved is affected by this even though it's physically only happening to me.

I know every time I think about changes that are happening, I get discouraged, and angry.
If you mom has always been independent, the diagnosis, or any little change is a reminder of the endgame, and is probably scared for herself and for everyone that is involved.

It does sound like depression, I know I go in and out of it, some mild medication may help get through the increased stress involved with the holidays.

Remind her Christmas is for the kids, and loving them is the best present they could receive.

I wish you and your family the best for the holidays, and hope you all share the love.

Cheers,
Casey
 
My Husband also acted very "mean" and was very hard to deal with. After he got on neudexta it seemed like his personality came back.
 
Oh honey, your mom is going to have to work this out, but I sure hope she gets on some meds that will help, sometimes we just have to try to look past the way they now are, and remember them as they were, cause unfortunately this can happen. Hugs to you!
 
As hard as it might be...try to be the bigger person and let the comments roll off your back. Maybe even for Christmas, still come and if she says anything say well you know mom...sometimes we have to do things we don't enjoy in life..but we are here to support you and here to celebrate christmas together. It is your choice if you would like to join us in the other room or not. This way, it doesn't come back to bite you if she has a last minute change of heart on Christmas day and becomes depressed thinking no one included her.

Also, you could try saying ...you knom mom you seem to have a lot of concerns about how things are done here on the weekend and who shows up. (Most likely she is having a VERY hard time becoming dependent on others). Have her make a list for all members of the family and friends of what she would like to see from them or have them do. Have her make a goal list for herself as well! Once it is written, there is a little more of a libaility factor and tasks can be delegated out accordingly.

Overall, sometimes people just want to be angry or nasty and you just have to let them. Don't look for your support in her( thank yous and such)...find it somewhere else. I am a caregiver for my grandmother who is in the 4th stage of cancer. Her mood can literally swing on a dime. Somedays, she says how nice it is that I am there...others...I am an annoyance because I don't do things like she does. Take it with a grain of salt and move on...choose your battles...it is not worth it to fight over chores.

Good luck!
 
Current studies done at University of Pennsylvania and University of California at San Francisco are showing that as high as 50% of ALS patients will show some level of cognitive change. This can range from small personality differences to full blown FTD. Paranoia is not uncommon with frontal lobe changes. There is a sub forum further down on the list called ALS/FTD. On it you will find links to some excellent resources to educate yourself as much as possible about these changes. It can make dealing with your PALS much more difficult.. on the other hand it can make it easier to accept that it part of the illness, not just a newly formed mean streak. See if any of it fits what you're seeing with your mom... we'll be happy to try to help you find specific answers.
 
It seems like they take it out on those they are closest too. Just try to put up a mental block, like water running off a duck. I would just have to do Christmas with her weather she like's it or not. Sounds like your dad will need the company too. and you don't know what kind of shape she will be in next year?Good luck, it is so hard : (
 
Part of the mourning process is anger! Your mother is mourning the loss of her health, control over her own life/body. And, with that there is a great deal of frustration. My advice, let her vent. Just tell her you love her!
 
I don't have any advice for you, I just want you to know I,m hoping the best for you and your family.
 
I am going to say that it is very possible she can also have bulbar which is part of ALS. It is personality changes. They cry one moment, laugh the next and be angry the next. I watch my husband closely and documented everything, any changes. You or your Dad need to watch and document the behavior and see what her Neurologist says. My husband went through this and he is now on Zoloft. The change was unbelievable. I am happy that it worked for him. But I will say that it may not be the answer for you or your Dad but it is worth a try to gain some happiness and peace for all of you.
 
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My SIL. Put me in check today. She noticed when her brother comes home my whole personality changes. She wanted to know what he did that made me so angry. I did not realize I was doing it. Then I realize something. Easier to push him away. Than to watch him as I get worst. The panic in his eyes. The worrying the sleepest nights. Know he is hurting and I want to protect him so I push him away .....I know this is so wrong. But it happens. I understand now why he has made the statements I can't do anything right. It's all my fault. I can't please you. My SIL. You and Casey. This thread. Has opened my eyes. Time for me to eat some crow. My poor husband and family. I saying sorry for me. I'll bet your mom is too
Hugs
Felica
 
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