Asl

[MistyHall]

Hello, my name is Melissa Hall. I want to just say that my mom Holly Farrell, got diagnose with lou gehrig diseases in September of 2013. And I would like to know what me and the family can do to make her life a bit more happier intill that day comes or if it comes.

 

[MaxEidswick]

>And I would like to know what me and the family can do to make her life a bit more happier intill that day comes or if it comes.

sounds like you have a good, strong attitude forthetask at hand. And you have come to the right place.

do you live near your mom? Do you think you'll be her primary caregiver or she have someone else? Is she a veteran? That last question is very important.

How is her condition today? I am 62, was diagnosed in August 2013, have trouble speaking, haven't really been able to eat since February, can still walk short distances, but have to use a wheelchair for more than 10 or 20 feet. Left arm mostly gone. Right arm to heavy to pick up, but the right hand still works enough to type with Hunt and PECK.

Many of us around here have a saying IIWII ("It Is What It Is!") ...

glad to meet you, sorry you have to be here, but I think you'll find much support advice and ideas on days on these forums.

Kind regards,


-----
Max - Saturday, July 26, 2014 8:39:26 AM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.

 

[Nikki J]

Hi I agree with Max. And If you could share more re the situation and your mom's current condition you might get more specific responses. Read some old threads and you will probably get lots of ideas
So sorry about your mom

 

[MistyHall]

Hello Max and Nikki. My moms condition isn't good. She can't talk, walk, or use her arms. She is chair bound. And will be having a feeding tub in here next month on the 21. I am one of her caregives. I live with her and her new boyfriend that helps me when he isn't working. And have a aid from where she worked at coming out to help also.
I am just scared what will happen to her when the time comes.
she had 5 kids. One passed aways in june of 2001.
And had to send my little brother to live with his dad in delaware, was getting hard to hear him say what he said to her.
Plus a grandma of two grandkids, that she can't see unless my old brother brings them here.

 

[Nikki J]

Your mom is lucky to have you! How does she communicate? Does she have eye gaze? Use speakbook? Another way? It is really hard I know. Important to keep some way to communicate and make her feel a little normal so communication is not limited to just the essentials of caregiving but includes normal conversation. Very hard to do I know.

Re the end of life you want to consider hospice. Hospice is more than just morphine at the very end. They can help both you and your mom. Do NOT get hospice until the feeding tube is done and you have all the equipment that you need.
How is her breathing. Does she have a bipap or other respiratory assist devices. Does she want them?
Good luck

 

[skipper66]

Were you meaning to write ALS which stand for Amyotrophic Lateral Sclerosis? Because I don't know what Asl is.

 

[MistyHall]

She does have a bipap. Plus we are wait for her to get a tobii. She will be using her eyes. The hospice she don't want. And breathing is not good. She has about 43% of lung capacity...

 

[MistyHall]

Ohhh the only meaning I know it is skipper66 is lou gehrig diseases.
Ohhj Nikki, also my grandma dog has lou gehrig diseases also

 

[MistyHall]

But I would like to know what else I can to for my mom.

 

[GregK]

Call these people ASAP:
ALS Association
Saunders Point Road Assn
100 Lee drive
Huddleston, VA 24104
(540) 297-2350

 

[MistyHall]

Greg, idk where in Huddleston that is in

 

[skipper66]

Misty,
Is there anything that would enjoy such as books on tape? My dad enjoys watching movies on Netflix. Can she get outside for a stroll with a wheelchair when weather is permitting. Does she have family or friends that could make brief visit to lift up her spirits. Can you give her a back rub or even massage her feet? Does she like any special music she could listen too?
Also, make sure to watch out for burnout for yourself. Try to take small breaks to get out with friends. Is there any support groups around for you also. Take care and if you have any questions on anything feel free to ask. Everyone here is willing to give support. Most are way more knoweledgeable then me though about all this. Kim

 

[Santa joe]

Hi Misty. So sorry you have to join us but you're at the right place. Your mother is very lucky to have you. Love her and tell her often. Being a caregiver is hard but you will never regret it. You are not alone. We will be here to hold your hand the entire time.

Debbie

 

[GregK]

Greg, idk where in Huddleston that is in

Doesn't matter: Call 'em. First thing Monday morning.

 

[MistyHall]

Skipper, its hard for me alone to get her in the wheelchair alone to take her outside. Only time is when the boyfriend/ mom's boyfriend, is home to get her in the chair. Movies hmmm she wants to see that new one. Called God's Not Dead. Only friend that stop here is my older brother ex girlfriend mom, and her daughter. That is like my sister.
Support groups I don't know. Don't drive, me time I am ok. Worried about mom instead.
my boyfriend/ fiancé from 2010, can't beleave my mom going down that fast.
But I am hoping before anything happens to my mom, I will make her dying wish comes true.