!

[lms9258]

Hi everyone,

I come on this forum sometimes and read, and learn from you all, but I don't have much time to myself, therefore, I don't post or ask questions (which I sooooo need to do!) My mom was diagnosed with FTD 5/07, and ALS 7/09. I think it! was bulbar onset--I have been meaning to ask that question on here--but never did, (you'd think her ALS Neuro"specialist" would have informed us, I'm really tired of so many medical professionals being so ignorant about ALS!).

I am my mom's primary caregiver, at least 4 days per week--at her house--24 hours per day. I am married, have 3 kids, 3 step-kids (all adults), and 7 grandchildren between the two of us. I have been caring for my mom for 14 mos. now. I have 4 siblings that "help" (very minimally), with the never-ending issues involved with her care. Because of the family dynamics involved, they all know I would do almost anything for our loving mother. Therefore, I do almost everything under the #@&*#@& sun--even though I'm not really "in charge" of anything! I also have 2 siblings that live out of state--no help there.

Because of the dementia (especially), and the ALS, I cannot ever leave her here alone on my Shifts. I'm Trapped! (Don't get me wrong. My mom is the most loving, kind person. I love her dearly).

I realize I'm not providing a lot of specific details (that would require 25 pages, and I'm a slow typist as well). Also, like I said, I don't have much time for myself-- can't even get to the ALS support groups, much less go to the much, desperately, needed counseling I need. I have left a message for the ALS Clinic Social Worker (Milwaukee), and she is a great listener and ally(Sp?), but she must not have had time to call me back today. I am so beside myself right now, I guess the 4 other sibling thing just pushed me over the edge. Believe me, I would so like to be asking an important question about my mom's care, instead of ranting and raving about how I just can't take their s#@& anymore.

I am really sorry for this crazy sounding, "poor me" post. I am also not too savvy in the e-mail, and messaging department. You don't know me, but I thank you all for the support I have felt here, and all of the 1st hand, intelligent answers I have gotten from many of you.

Thanks for "listening", especially because I am not sure my overloaded self made much sense.

Peace to you all,
Laura

P.S. Could someone tell me how I can PM another member? I do have some very important questions to ask a couple of you pertaining to actual health issues regarding my mom. Thanks again.

 

[abbas child]

Hi Laura,
To PM a member, go to their name by their post. The name is in blue. Click on it, and it will open a list of things you can do. One is to privately message that person.

I am so very sorry you're being unfairly left holding up everyone's load with your mother. Will pray for you, and hope you can find help.
Hugs--
Ann

 

[lms9258]

Hi Ann,

Thanks so much for your help and encouragement. I think maybe I should have posted on a different forum. When I used to have more time to browse, or search for info, I used to see meltdown type of posts on the caregiver support, PALS, CALS, and general discussion forums. I also didn't post much back then, because there is a member on this forum, who quite frankly intimidated me, and was down right mean. (Sorry, off subject--but it did affect my actively participating on-line with everyone--she kind of scared me). No excuse, but at the time I really didn't care to deal with that kind of stuff--my mom's illness was my priority.

It seems as though there are not very many members who are viewing my post. Is it possible to move this to another forum? I guess it doesn't really matter, except from an "I needed support" perspective. I just did not have enough time to ask the really important questions, and concerns that pop up everyday about my mom's situation. I used to research these issues on the forum threads that already exist. Again, I just don't have enough time anymore. Furthermore, I'd rather ask the supportive members who are actually dealing with all of this in the present. I realize there is no "timeline", so to speak as far as my mom's illness goes, but some of the PALS on here are progressing quite similarly to my mom.

Sorry, I did not mean to go on and on. I will look up some of my very favorite members to see where they're at, and how things are going (Time allowing). Thanks again for your care and concern.

Laura

 

[abbas child]

Laura, you could start a new thread on the Caregivers Support (CALS) page, "Go Advanced" and in a separate tab have this page up. Then cut and paste your question/concern above onto a new thread in the Caregivers area. Or, easier yet, ask Joel or Al (Moderators) to move your thread there. Click onto either of their names in blue to ask them.

I hope you can get some help and support... and find your old friends. Best wishes to you!

 

[joelc]

I hope it will attract more attention here. Sorry about what is happening to you! It is all to common for one person to do 95% of the work! My heart goes out to you!

 

[brooksea]

Laura,

I'm sorry you have all that on your shoulders, when you have family that could be helping at least a "little more." All I can say is good luck to you and thank you for caring for your mother!

 

[DCL1964]

Going thru the same thing with my brother's children and friends so I know how you feel. Hang in there.

 

[Zaphoon]

Laura,

No need to apologize for the need to vent. Thank you for all you are doing for your mother. When you look back at this time from some point in the future, you will not regret the time you took to be there for her.

I'm hoping other caregivers on this forum can give you some ideas that will help you. You need someone to step up, step in and share the care!

Blessings on you!

 

[DCL1964]

I just don't understand the problem with getting families and friends involved in care giving. My father had a heart attack in 2005 and I took care of him with little help. Granted my brother lived 4 hours away and would come up on the weekends to help when he wasn't working but the grand kids (both adults) never helped. I don't want to hear about them being scared. As caregivers and as PALS who deal with this everyday, don't they think we get scared too but still we find a way to cope. I try not to think about what my brother (APL55) and I will have to deal with in the future because it scares me to death. If you love someone, stepping up shouldn't be a problem.

 

[Katie C]

Laura.. vent all you need to! The FTD/ALS combo SUCKS! And you are right.. it is hard to not feel trapped. I like to share as an example the time I just HAD to pee.. and Glen managed to get out of the house, and it took driving around the neighborhood to get him back home! If coming here and venting helps, please please do it. And if there are any questions you have about what our neuro lovingly referred to as the "double-whammy diagnosis" there are several of us here who are or have lived with it.. we'll do our best to help. Hang in there.

 

[cris]

Hello, And I'm so sorry you had to find us, but you did right coming here! We all know how you're feeling. Many of us have experienced the same situations you are. Just perspective... Some people can't handle the sorrow and hurt and emotional pain of seeing a loved one going down this path! That being said....I have decided that if they can't "cowboy-up" then forget them and move on to seeing if you can find some help through the ALS assoc. or your local MDA Assoc. or any other means you can! Do you by chance have a church? Sometimes they or a neighbor are more able to step up(less emotionally envolved).

I will be praying for you and your mother. Just remember..."God Never gives us more than we can handle".

God Bless!


cris