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helpinhand

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Joined
Apr 14, 2010
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Loved one DX
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US
State
nc
City
on the coast
I am a caregiver for my father-in-law which was diagnosised in januaray of 2010 with ALS and FTLD because fo the FTLD he really doesn't quite understand what is going on but he also never complains you will see him get SOB but when you ask him if he needs to rest he will say Im fine, Im good. Unfortunately that is the answer to everything. His FVC is only 36% he had PEG placed 4 weeks ago has no functional use of arms, and trunk weakness is severe, but he still thinks he can drive, still wants to go to work, etc. My mother-in-law, myself, and my husband take turns caring for him 24/7 and we would like to know how we might tell if he is having cramps,pain, or what ever else he says he is fine but gets up multiple times at night he says he doesn't know why. We are looking for some insight from those of you living with this in hopes to help Dad...

Thank you for your input

PS i have been here for months now just reading you all are the strongest most supportive people I have ever experienced and i thank you for being here. Nice to know you are not alone.
 
I am sorry for his fast progression. I was thinking the other day of if and when I am to that point. Things like the bipap I adjust a lot during the night,too loose or too tight... or it will itch under it . I have a right leg that hurts real bad sometimes. I need to get some pain meds in me or it becomes unbearable... I just think it is hard to tell ,but maybe you could touch his arm or leg or facemask trying to get some Idea what is bothering him?/ Sorry wish I had a better answer for you. L
 
Hi, and welcome. I'm sorry your family is facing this awful disease, but, as you've said, this is an incredible place for encouragement, support and wisdom. Some thoughts for you to assess your dad-
*Since his ability to report accurately how he's feeling, the best course of action would probably be to set up a routine of "things" you do for him daily that would help to minimize stiffness, cramps, pain etc. (for example, passive range of motion & massage of his extremities) doing that will allow you (or the person giving the massage) to learn how his body feels to YOU each day, and then you will actually be able to notice a change if/when it occurs.
*If you ask Yes/No questions, can he answer appropriately? If so, then you can ask more specific questions than "Are you ok?" Open ended questions are often too overwhelming to process.

Hope this helps-
Peace,
Melody
 
KatieC or shelleynshaggy would have good info on this. I know there is a good site for FTD and ALS, just cant seem to find it. Do a search on the top of the page, or send a message to one of these CALS. HUGS Loir
 
Thank you all for responding, the passive range of motion and massage sounds like great idea, to answer your question about yes and no answers he reverses what he means alot such as yes is no hot is cold etc. I can't tell you how much this site has helped the many questions we have had already. Keep up the courage,love and kindness it help those of us in the dark to see some light.
 
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