Hello, I'm new

[sweetea26]

I'm just now finding this website and am glad I have. I am 26 and have been my mothers caregiver since she was diagnosed with ALS in January 2004. It has been hard at times but I always try to keep it together, not only for my mom, but my two young children ages 6 and 2. I am an only child and sometimes I get bitter or resentful because my mother is 44, the youngest of 8 children and her brothers and sisters barely help. She has 2 sisters. One comes to visit about once a month and the other comes every weekend to help wash my mom (I'm very grateful for her help). However she has 5 brothers who haven't even so much has called in about a year. It just seems like everyone just forgets about my mom and just goes on with their lives. It hurts, but I just try to hold on and and do what I have to do as her daughter.

I get depressed sometimes watching her deteriorate, and it's hard for me to just get away for a while. To collect myself. So far I have been traditionally taking my children to Disney World every year just so we can get away for about a week. I want to make sure that I keep them occupied and not sucked in to the depression of the household, because it CAN definitely get depressing in here. Their dad, my fiance, has been so very supportive but I can't help but feel bad that we don't get to do the normal couple things as much as we'd like.

I don't know. It seems like it's kinda hard to get family involved and I just need someone to talk to sometimes. My aunt, the one who comes over every weekend, is the one who takes my mom every year when we take the children away. I'm glad that she always agrees to, but I feel like I shouldn't have to work so hard for it. That break. She never just gives me an answer, it's always a run around and call backs and so much an so on, I barely want to ask. I have just started paying her when we want to go so maybe it'll help.

I just wish my mom wasn't like this, and it hurts. Currently she needs help transferring from bed to chair, and using the commode. She can still feed herself (she uses Dining With Dignity forks and spoons), and use a remote. She also wears a BiPAP every night to sleep. Right now we are focusing on making sure she keeps her weight up because she is adamant about not wanting a feeding tube. Her speech is also fairly slurred; others can understand her sometimes but I usually have to help translate.

She was diagnosed on 2004 and I am happy that she was able to last that long, however I am BEYOND nervous that it has been so long that the end could be soon. I'm just worried and just.....I don't know, worried.

 

[Miss]

Hearing your story humbles me. I am reminded that these four walls don't encompass the world. You are a strong and brave woman. Your mother is a lucky woman to have you for a daughter. What an amazing man your fiance must be, too. I think I would just call your aunt and tell her it's time for your annual Disney trip. I might point out that "after a week of caring for Mom, you realize how important it is for the children and me to get away", then thank her.

 

[sweetea26]

Thank you for your kind words. This whole experience has humbled me. My mother was always the "get-up-and-go" type of person. A total alpha female, but seeing her like this...I don't know. It just does something. My 6 y/o daughter has been a great help. She knows MaMa is sick, she just doesn't know the seriousness of it. She helps feed her, wash her face, blow her nose, lotion her down and anything else her "little self" can do; and she would be absolutely devastated if MaMa were to pass. We're just taking it one day at a time, trying to keep my mom included in everything and keep her as sane as possible.

 

[rixelvis]

Will pray for you tonight sweettea. I too have a parent with ALS, diagnosed around the same time. My situation is not nearly as taxing personally as what your appears to be. Thankfully, my Mom is there to care for Dad...who still manages laregly by himself. At the very least, it sounds as if your mother must be proud and thankful for you.

 

[Alianora]

I know how you feel. I am 26 and my father was diagnosed with ALS in fall of 2009. I am a part time caregiver for him, along with my mother and 23 year old brother. However, I am unmarried and do not have any children. I have been living at home and haven't had a full time job since December 2008.

It is difficult. It is tiring, physically and emotionally. And it must be so hard with two little children in the house with you.

You definitely deserve your annual vacation with your kids and fiance. I agree with Miss's approach to letting your aunt know you need this vacation badly. You are very lucky to have her to help you bathe your mother. And you should definitely bring her a souvenir or something to let her know how much you appreciate her!

Keep taking it one day at a time, and don't give up... no matter how depressing it gets.

 

[brooksea]

sweetea26: You've been taking care of your mother for 7 years, yet your mother's large family gives you no respite?!? You have to PAY your mother's sister to care for her while you are gone?!?

You are too young for these family members to do this to you! They are taking advantage of you.

I'm sure you are used to the routine of things, but you have your children and fiancée to think of, as well as your self in the prime of your life.

You need to have a family meeting with your mother's siblings and get SPECIFIC commitments from each of them to take part in her care. If they "commit" and then fail to follow through, it's on them! At least you asked and it's off of your conscience then.

If you have to pay your aunt to take care of her sister for just a little bit, there is something wrong or your aunt is in need of a job. I think your state will pay a family caregiver. That may be something y'all should look into.

 

[Alianora]

Wait, you PAY her to take care of your mother? Does your mother know this? If so, what does your mother think about that arrangement? Sounds pretty ridiculous. If my mother wanted a break for a week, the least I could do for her is take care of my dad for that time! I would never want to be paid!

 

[Lavender Lady]

I am glad you have joined the forum you certainly need the support you will get here. There is lots of great advice that has been suggested to you but here is a couple more. On the weekends her sister comes over maybe she could plan to stay for 4 hours and then you can all get out have lunch, go to movie, park etc. I took care of my mom when she was nearing the end. I have 7 siblings and only one really stepped up to help. I had two young kids also and spent alot of time without them to care for her. She is gone and I don't regret it, but I hate that they my kids 11 and 13 are now helping to care for me. It should not be this way. Best wishes be creative and I will pray for you.

 

[sweetea26]

Thank you everyone for your advice. My mom knows that I pay my aunt but she doesn't think that it should be a problem. Her thing is, she doesn't want to be a burden to anyone, so if paying makes the person feel a little better about doing it than she's fine. I know it may be wrong, but we just want everything to go smoothly.