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[Sophia'sOpa]

Hello Everyone,
I am starting this post with alot of emotion and confusion. My father was recently diagnosed with ALS and is currently in a subacute facility waiting to come home. This was a sudden diagnosis. Dad had started to not feel well last Summer....voice changed, appetite changed, becoming lethargic, moody and just not the man I knew. We went to doctor after doctor and all the tests were coming back negative. On March 1st, he woke up in respirtory failure, the same day he was to see the Pulmonologist and a week before the Neurologist. Within a day, dad was intabated and on a respirator. It is now 2 months later, he is on a vent/peg and has has been diagnosed, spent a month in a rehab facility and now has moved to a subacute. I waiting on the medicaid to go through to bring him home. The ALS center has been great...got a tilt maual and power wheelchair for him from the loaner closet. I intend to be dad's caregiver but its complicated...mom is already in a wheelchair and needs help too. My qurestion to all of you is can I do this? I am so worried....I work full time, have a 2 yr old and a husband. I want to do it all....I am jsut beginnig to understand the situation that I am in. Its my dad...I love him more than life itself and would do anything for him. Its the first time he is asking for my help. I would love some feedback....I am lost right now...don't know where to start or what to do..... sorry if it sounds like i am venting...but no one seems to understand around me.....just very lost

 

[Miss]

Personally, I don't think you can or should handle all of this - nor should your family. It is hard enough to take care of an ALS patient when you start out from the beginning. To have your father as advanced as he is and your mother in a wheelchair needing care, too - it sounds like too much to me. Is there no way that the two of them could go to a nursing facility together? That way, they could get the care they need, and you and your family could spend quality time with them.

 

[notme]

First, let me say I'm sorry for his diagnosis.

Can you do it all? Absolutely not--nor should you. Once his medicaid comes through, and SSI/SSDI (he should apply if it hasn't been done) they will help with caregivers at home. USE THEM. Get all the home help you can. Someone on a vent needs a lot of support--it CAN be done at home--but it requires proper training--for you and any other caregivers.

Don't feel bad for any limitations you find in yourself--you''re one person. You absolutely can't be his only caregiver with a full-time job. Someone on a vent needs more care.

I'm glad you've found the ALSA. Contact the MDA, too--they might be able to help as well.

With your mom in a wheelchair, too--her ability to help with things will also be limited.

Talk with the ALS people and start getting needed equipment from loaner closets -- don't 'buy' anything you absolutely have to buy. Some don't realize that there is quite a bit of help out there.

i understand wanting to care for him yourself--but realistically, you simply can't and still work full-time. You can help--be there for them both. Absolutely no reason to be sorry for venting here--it's part of the reason we all are here. This is a safe zone to say the things you need to express.

Caring for YOU is just as important as caring for him. Have they assigned you a social worker through ALSA yet? If not, they will (in most states, I believe)

Financial things and medical proxy issues might come up. As I said--the ALSA will help a lot. People here that know a lot more than I do will also chime in.

Ask any questions you have--people here will help with answers.

My one piece of advice is this: ALLOW yourself to FEEL WHAT YOU FEEL and don't feel guilty for the various emotions you find you will go through during the course of this insidious disease.

Hugs and prayers

 

[CoachMeg]

You have already received phenomenal advice. Feel free to continue to visit this forum and ask questions. My husband was diagnosed in February and these wonderful people have been an invaluable resource. Good luck.
Love and light
Meg

 

[kmendsley]

I second the great advice. Use the caregivers...you will just get burned out and won't enjoy the times you have left with both of your parents if you are running around trying to care for them both...and your toddler as well. You will be glad you did esp. when it comes to times when you are running on 'empty' and don't feel well you will have back up. Think of it this way...right now you feel on top of the world as a superhero ready to take on the obstacles ahead of her...this is good...but remember...every superhero only gets to where they are with some help from their trusty sidekick.

 

[brooksea]

You will not be able to do this! Sorry! That is a fact!

Please seek out sources that will be able to help your parents. That will benefit you all in the end.

I'm very sorry about your father.

 

[catcaniac]

I agree with all of the wisdom above. Please don't agree to do this as you will only be allowed the amount of care they think you will need. Act like you need a lot in the beginning. You can always help more later. Once you take on the role, you won't be able to get out of it. Let them get all the help they can then you and your family can spend your time visiting them and supporting them emotionally because you will have some energy left to do that. Don't feel like you are letting them down. Explain to your dad that you want to be able to spend time with him and allowing him to enjoy the grandkids, etc.