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jenalsdaughter

New member
Joined
Jul 12, 2017
Messages
6
Reason
CALS
Diagnosis
10/2015
Country
US
State
IL
City
Rock Falls
Hello, I am new to this forum. I have been reading a lot of the threads and it seems like all of us CALS are dealing with pretty much the same things. I am the main caretaker for my mother, Audrey. My brother and I moved in with her after my father passed away a little over a year ago.

Up until about a couple of months ago she was able to walk very short distances with a walker and someone walking with her. Now she is totally bedbound unless I put her into her chair. She can still somewhat feed herself with her left hand, but that ability is fading.

My brother and I were both suppose to be caretakers for my mother, but I've noticed that it is actually only me. He thinks that because he is in the house in case of emergency and since he fills her water bottle and gives her lunch that he is doing his fair share. I make my mother breakfast and supper. I bath her, clean her up when she has accidents, empty her catheter bag, put her on toilet for her BM's, and any other things that need to be done around the house.

My mother will not say anything to him about this. It is very frustrating, but at the same time I love my mother so much and I know that if I were in her situation that she would do the same for me as much as she could. Oh, and I also forgot to mention that I work full time days as a CNA because I can't afford not to work and I am raising my 10 year old daughter. I am just venting here because I need an ear or two to bend. It feels much better to just talk (or type) about this.
 
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So sorry to hear about your mom. My husband was diagnosed that same month.

Maybe you can talk to you brother and see if maybe he can do a few more things? In my family, my sister and I are more the caretakers of my mom and my brother does what we ask him to do.

This disease stinks and we are all spread really thin. I think trying to work through these things before we let it REALLY get to us may help?!

We are here for you for support, answer questions or to vent anytime you need to. HUGS!
 
How did this post only get one reply?

I couldn't imagine doing this CALS thing with a job and 10 year old child. You're my hero of the day.

Sorry to hear about your brother. Some people just don't get it. I have a similar situation. I'm disappointed at my 29 year old son for his level of help. At the same time, I don't make too big of deal about it because I don't want to upset my wife.

This disease hurts most when the CALS truly love their PALS. It's sound like you really love your mother. Hang in there...

Rob
 
Hugs to you.

My husband was just diagnosed and we are in the very early stages of progression, so my care for him is very minimal, if at all, for now.

I will second the earlier opinion of you being a hero of the day! You're a trooper. Please hang in there.

Take good care.

J
 
Hi, Jen, and welcome.

If you want something to change, it's you that's going to have to confront your brother, with "just the facts."

You work. You have a ten-year old. Etc. What does he do, work-wise?

Best,
Laurie
 
Rob, thank you very much for your reply. I do love my mother very much and would and do everything for her.
 
Lauri, he works at Wal-Mart and I have confronted him, but he thinks that since I'm a CNA I should do all of the care for mom. It upsets my mother to see us fight. So I just suck it up and do it because she deserves good care. She did finally this week get approved for in home care which will help me out alot.
 
Thanks NothingButLove for reviving this thread, and sorry jenalsdaughter that you are going thru this (& that you didn't get many responses). I think Laurie is right - you need to confront your brother and say "yo, I need help!!". Since you are a CNA, you are probably more proficient/capable in assisting your mom with bathing/toileting, etc. And I am sure your brother feels more comfortable allowing you to do these things. But, make your brother understand that you need him to help transfer her now and then, and go do the grocery shopping/watch the house while you do errands, stay with mom and watch a t.v. show while you go have an hour or two with your daughter ........ Speak up and let us know if you have any success with persuading your brother to contribute more! Good luck, and hugs to you!!
 
Thank you everyone for your support. My brother probably won't change, but it is just good to vent and get the stress off of my chest.

Update on my mother. She did get approved for homecare and medicare is paying 100% for PT, OT, speech, nurse for catheter care and bath aid. I think that this will help a lot.:lol:
 
Jen, glad to hear your mother is going to get home care. That should help you a lot.

I find that a lot of men think that caregiving is the woman's job. They don't really understand the need to participate and don't always feel that it is their role. My husband's mother was ill before she passed away, and his sister did most of the caregiving. He said she did not want him to help her with things like bathing and toileting. Perhaps that is the case, but it puts more burden on you.

V
 
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