Advice needed from experienced folks

[grp_believes_in_God]

Dad is becoming increasingly weak every day. He is barely able to walk now and his back and leg muscle feel "tight". Is there any way to get relief ?
One guess of mine is he is eating less due to swallowing issues and because he can't taste food well nor does he feel hungry. May be his body is not getting right nutrition.
Doc is insisting on feeding tube but Dad refuses and says he can still swallow but I can see his obvious difficulty in swallowing.
A few questions:
1. Does nutrition through feeding tube helps slow muscle atrophy ?
2. I don't mean to be dwelling on the negative but I want to prepare myself and my family for what's coming. Does a stage come when there is total paralysis? How does one deal with a situation where you can't speak or move? It seems like a pretty grim prospect. I mean even a little movement is better than none. Does a time come when there is absolutely no movement ?

Thanks

grp

 

[TRACY22]

Caregiver Support

Are you in a Caregiver Support group? Do you sit in with your dads Dr. appointments?

 

[Snowbird]

Hi Tracy!

I am so sorry for what you are going through. I have been there with my husband.

Everyone is entitled to their own opinions, but to my way of thinking, I like to leave the decisions up to the patient. My husband would not eat 'mush', and he did not want the feeding tube either. In fact, I think he only had 4 or 5 meals with the feeding tube. Yes it provides nutrition, and buys time. But he liked his food!

BOOST or ENSURE might be good for him to drink with a straw.

However, just enjoy your dad and try not to put pressure on him about his desires. It is HIS life. Just do what you can to make him happy, and make him laugh. Tell stories, and take him lots of places.

Yes, he may become paralized, but so what! You can do what you can for him, and so can others. The greatest gift you can give him is your love, and his dignity.

Believe me, I know how tough it is for all of you, but just try your best and enjoy every moment that you have with your dad.

God bless!

Pat

 

[MtPockets]

One of the worries loss of friends

One thing to try to help him is to be sure people visit him often. It seems as the ALS progresses, friends and family tend to stop visiting and calling. Some probably have trouble dealing with terminal illnesses, and I understand, but it is so important to have your family and friends continue to support and encourage you up to the end.

Even if you are paralyzed and cannot talk the company is needed. Love and support is all I am asking for from anyone until I pass on.

As for the nutrition trying to help with the atrophy, no I'm afraid it will not help, only exercise will help and with ALS it helps very little. Almost not worth the effort because of the pain involved after muscles have become so tight.

At least that has been my personal experience. Maybe others can give you a better outlook on this. I know you are looking at the worse that could happen now, but you should be looking at living each and every day as if it were the last. Enjoy every moment you have left with your loved one and work things out as they come.

God Bless,
Big AL

 

[TRACY22]

to GRP

SECOND REQUEST

Are you in a Caregiver Support group? Do you sit in with your dads Dr. appointments?

 

[Al]

Hi grp. There may be a time when total paralysis becomes an issue. You can plan for it and it is hard to accept and deal with, if and when it happens.. Is just a difficult time for everyone. There is virtually nothing you can do to stop muscle atrophy. Rilutek may ? slow the progression but it works differently for different people. No one really knows. Some think it helps and there are others that question whether it does.
If no mobility becomes an issue possibly an institution may be the only answer. Not everyone is equipped emotionally, physically and has the facilities in the home to look after someone in a paralysed state. It is a difficult decision but you should be asking yourself these questions now. When the stuff hits the fan is a bad time to be trying to make decisions about a loved one. AL.

 

[grp_believes_in_God]

Hi AL, As you correctly pointed out, I am asking the hard questions to try and prepare my family for whats coming. Seems like progression is quite fast in Dad's case and difficult days are not too far ahead. In six months he has gone from being able to walk half a mile to barely able to walk from living room to bed room. I hope he retains some strength till the end. Thanks all for the advice.
Tracy, I was in some of the Dr's appointments and I am not in any Caregiver support group. Do you know of any in Chicago area?

 

[TRACY22]

need to talk?

THIS INFO IS FROM THE CHICAGO chapter, but Ihave not talked personly with them.

The ALS Association Greater Chicago Chapter
Telephone - (312) 932.0000
Email - [email protected]
http://webchicago.alsa.org/site/PageServer?pagename=CHI_contact_us

IF OTHERS OUT THEIR want to send an invite to our new member, please speak up.


We joined a group in the 1st 6 months and have now a great group of new friends and resources.