Tired and Frustrated

[JACKSON4951]

My mom's onset was December 2006. She is now completly debilitated since April 2008. It is getting to the point that you cannot understand her speech although we all desperately try too! Whenever you try to figure out what she says and can't she gets so upset that she starts to whale which makes the understanding process even harder - I know its not the right thing to do but last night I started walking away when she started. I feel I am mentally, physically and emotionally exhausted trying to upkeep my house, my children and run up here on the weekends to help and take care of this house. I don't want my mom to know - my view has always been we don't know how much longer we have her so give her whatever she wants - but I can see it getting worse before it gets better? Am I alone in my feelings of frustration? I feel horrible saying this but I was dreading coming up here this weekend! I live an hour and a half away and come up every other weekend bedause I thought every weekend was wearing me down - I have three children and used to have a job I loved. I ended up losing it as I had a mental breakdown one day and walked out because they would not give me a day off which I so mentally needed. It is a part-time job with no benefits and unpaid days off. I feel like I am losing control of everything because of this! I want to run away and find a bed and sleep for a week! Am I wrong with my feelings?

 

[tiredintx]

Hi. You're not wrong in your feelings. Being a caregiver to someone with ALS is hard and you need to not forget to take care of yourself also. I lost my mother to Bulbar in 2001 and now my sister has ALS. I had her living with me until March when taking care of her became too much for me to do at home. You need to make sure you take some time for you because you cannot be a good caregiver if you don't. God bless you.

 

[JACKSON4951]

Thank you for your replay. I just feel like I am in the middle! Coming up here my parents are constantly fighting and arguing. My mom was a control freak before this happened and she still tries to control - my dad tries his hardest I know he does - but I know he is frustrated with her still trying to control. She got mad a few weeks ago because he did not feed her the exact piece of meat on the plate she wanted! Does not make a stressful situation any less stressful! The sobbing and whaling I call it really get to you more than the physical side of taking care of someone! This is horrible to say but even if we knew when the end would be, it might be easier - but not knowing how long we all have to endure this horrible disease makes it even more resentful!

 

[crystalkk]

I'm sorry about your situation.... Your mom might have emotional liability, is she taking an antidepessant. If not you should talk to her dr about it.

 

[BethU]

Jackson ... it does sound like your mother is having "emotional lability" problems. That is part of many cases of ALS, where the part of the brain that controls emotional expression goes out of whack. I think when you say, "She starts wailing" that is what you're talking about.

Talk to her neuro (or get her daily caregiver to talk to him/her). This can be controlled. I can tell you, as someone who has really bad emotional lability problems, that your mother probably hates what's happening to her as much as you do. She can't control it, and I'm sure she doesn't understand that this is a very common symptom of the disease.

There are several meds that will help. It will make all the difference in managing this disease.

Good luck to you both!