Not sure what help is out there...

[rbosse]

I don't know if I'm being selfish, ungrateful for my mom or what but I need some advice on the situation. This is really beginning to put a toll on me to the point where I'm going to break and it's affecting my relationship, my new promotion at work as for sleep/stress at home. I'm not able to leave without someone being with her because she randomly starts choking (not often, maybe once a day.)

I'm 25, living with my fiancée in our home and my mom was diagnosed with ALS about 2 months ago. She is currently living with me and we don't have room for a medical bed anywhere so she's having to sleep on a lift chair (which she enjoys.) She has no insurance as of right now, pending Medicare and possibly Medi-Cal... She does have an IRA with only $49,000 in it and I believe it's "exempt" from getting her disqualified from Medi-Cal. Her and I have talked about using some of that money to put as a down payment on a 2br condo and I will pay the mortgage payments so Medi-cal/Medicare will cover some type of living assistance.

I don't know there is any type of assistance whether it be hospice/assisted living, etc? She's not able to move, eat, bath, or use the restroom without 100% help in which I take care of from 3pm-5am (I work from 6am-2:30pm). Currently a caregiver is there during the day from 9am-3pm but this is also hitting her hard on her disability ($1414/mo). I am at a loss of what to do... Please someone help me out here or point me in the direction of what I can do.... I APPRECIATE and cordially thank you in advance!

 

[joelc]

Sorry about your mom and the situation you find yourself in. Someone will jump in who is more familiar with what is available in your location.

 

[Jellycat]

Robert,
so sorry about your mom & your situation. I'm not from your area so can't jump in but I think what you're doing is great. Hang in there. Sending love & online support.
Avril

 

[Katie C]

OK, first thing you're going to do is contact your local ALSA ... probably the Los Angeles chapter. You're going to talk to the social worker, who will be able to walk you through what services they can provide for you and who the best people to talk to are for services they can't provide. A call to the MDA (Muscular Dystrophy Association) will probably be helpful too. But start by going to alsa.org, finding your local chapter, and making that call. Good luck.

 

[Pat Paine]

Hospice is a benefit of most insurances, talk to the social worker soon. Is your mom seen at an ALS clinic ?
That would be a great help to you. MDA funds several clinics in CA, pays for visits and loans equipment.
You need to take care of yourself too.
Blessings to a good son.Pat

 

[LizT]

Also, there is Stu at ALSangels, which is in CA, I believe. He may be able to help.

 

[sadiemae]

The ALS Association Golden West Chapter - Greater Los Angeles office: Clinics

 

[rbosse]

Thank you for all of the replies. Reading through these slowly and will post thank you and follow ups to all of the replies as well.

@KatieC, I will be looking into this and calling them in the AM tomorrow

 

[brooksea]

Robert, I'm very sorry about your mother! What a loving son you must be!

There is a guy on Patients Like Me that lives in CA and I believe he is on Medi-Cal. I think he could help you out with info on how to maneuver through the system. His screen name is TipaCow.

 

[Chameleon]

Dear rbosse-

I hope I don't have to rely on my son (26 years old) as your Mom is needing to rely on you, but I know if it comes to that, he will take care of me without question, as you are doing for your Mom. I'm sure your patience and loving support mean the world to her.

You both know that she brought you into the world, and you will see her out. It's humbling to see the end before it arrives. Your frustration is understandable - it sounds like you are maxed out - but keep your heart open. No one can have ALS or be affected by it without being devastated at some point or on some level. I'm sure your Mom is as sorry to be troubling you as you are troubled by your situation. I'm sorry I can't help, but it sounds like there are a lot of great suggestions coming forward. I hope you get the support you need.

 

[AKjo]

This is a huge responsibility for a young man your age and stage of life. I hope your fiance realizes what a rare treasure you are to be so devoted and dedicated in caring for your mother. My blessings to all of you.

 

[Katie C]

Robert.. were you able to get in touch with ALSA today? You were on my mind this morning. My son is also 26. He and his girlfriend moved in here while Glen was sick... his help both before and after Glen's death is more valuable than I could possibly say. I think sometimes people underestimate what you guys are truly capable of. Hang in there, and keep asking questions... we're here to help!

 

[LauraA]

Hi Robert---I feel your pain, I truly do. I am my father's caregiver, and he cannot do anything without support---and I work also. You are not alone! This is the best forum for you to connect with in order to find support and guidance. I hope you find the relief and help you are looking for. You will receive such blessings in your life for caring for your mother so selflessly. Hang in there.

 

[rbosse]

I didn't get the chance... although my father who lives in Arizona called around over there to see what they had to say and they are going to get back with him... I will definitely call tomorrow... work is stubborn sometimes and as my luck continue's I had no lunch today

 

[sadiemae]

The ALS Association Arizona Chapter: Patient and Family Services This page tells you what all the Arizona chapter offers.