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samsmom

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CALS
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ma
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Boston
I posted several weeks ago about my Dad who they suspected had ALS and we have a confirmed diagnosis as of today.

My dad is 86 and it took a long time to get a diagnosis given his age. We are not shocked but very saddened and overwhelmed. I know it's going to be a long haul and my father is not good at asking for help. His biggest fear is being a burden and ruining my life. I am the only caregiver (my mother has passed and my brother is estranged).

Just looking for anyone else who has been through this with an elderly parent with any tips or advice for this early period.

Thank you so much. I feel so much better knowing that this resource is here.

Jennifer
 
I am very sorry. This is tough no matter what age. My mother died at 84 but her presenting symptom was dementia so it was different. Plan ahead as best you can. Things change so fast!
 
Hi,

I'm sorry about your Dad's diagnosis but, I am glad that you found us.
Here, you will find a wealth of information as well as people who care and that are willing to help you and comfort you in this journey.

As Nikki J says, you've got to plan ahead as this disease progression is unpredictable.
No two people affected by it progress similarly.

Try to contact immediately your Local Chapter of the ALS Association (ALSA) so they can send a representative to your home to make an assessment of what your father is going to need to be able to provide it to him in a timely fashion.
They can loan you equipment for your father such as lift chairs, hospital beds, Hoyer lift, shower commode, rolling walkers, communication devices, etc.
Just contact them.


Good luck and, don't forget to post back whenever you need help and support.


NH
 
So sorry about your Father's diagnosis, but you have come to the right spot.

Is your Father a veteran? If so the VA will provide him with anything and everything possible. If he isn't there is still a wealth of information to be had at a local ALSA or MDA chapter.
Like NH stated, they can supply you guys with many helpful aids to make his life more comfortable.
 
Thank you all. I've been in touch with the ALS Association and am pursuing his veteran benefits. Nikki, I see that you're in the Boston area. Any local resources that you know of other than then ALS Association?
 
Where is he being seen? MGH is the best!
Best wishes
Nikki
 
Nikki-

He was originally diagnosed at Mt. Auburn and we went to MGH for a second opinion. We are also considering Lahey which is closer to where we live and would allow him to drive (while he can I know) to his appointments.

Jennifer
 
Nikki-

Contact the Paralyzed Veterans Of America (PVA). They will be your representatives with the VA. He will be rated as 100% disabled as the VA considers ALS a presumptive service connected disability. I contacted the PVA back in Feb. when I was diagnosed and was rated @ 100% before the middle of March.

Good luck!

Joel
 
get a copy of med records, regional va may have pva office there, forward every thing to them. they pick up the ball and run. as you progress and additional help is needed continue to do it all through the pva. without them va gears turn slow
 
Oops...sorry, I meant my post to address Jennifer not Nikki. Long day yesterday!
 
Thanks everyone. I contacted my local ALS Association and they were amazing. She referred me to the PVA. What a godsend. Incredibly helpful.
 
Thanks everyone. I contacted my local ALS Association and they were amazing. She referred me to the PVA. What a godsend. Incredibly helpful.

I am glad you've got the help you need.
Post back with any other questions/concerns you may have.


Take care.


NH
 
Contact Compassionate Care ALS, they're on the Cape and ALS Family Charitable Foundation in Bourne... they're both wonderful.
 
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