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Amanda529

Member
Joined
Nov 6, 2007
Messages
20
Reason
Loved one DX
Country
US
State
OH
City
Berlin Heights
Just this week my dad has been having problems with his hands. He has a hard time buttoning up shirts and on Sunday the cashier gave him change back he dropped the coins on the counter. To me it looked like he could not control his hand. I personally think he is losing his motor skills in his hands is there a way to tell this? He is now at the point you cannot understand him. I am waiting on a call back from his ALS doctor to find out how you get a communication device. It breaks my heart to tell my dad each day I can't understand him because I know it makes him mad. You can understand him at first when he talks and the more he talks he mumbles and all the words run together. I have said this before I hate this disease and it is so evil. I would not wish this disease on anyone! This is really affecting me a lot because I hate seeing my dad this way! I am my dad's girl even though I am 27 I am still my daddies girl! My doctor just recently put me on depression medication because since he was diagnosed on 8/8/07 it really has torn me apart I have been a nervous wreck and my emotions are so high. I lost my best friend Trevor in 8/04 and I thought that was the toughest thing I would ever go through boy was I wrong! I just don't know how to stay positive when I know he is slowly going down hill and is going to eventually die. I honestly don't want that day to come for years but I know that will not happen. Okay I did a lot of venting thanks for listening. God Bless!
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Amanda, I will keep you and your dad in my prayers. I know it hurts, the best you can do is live each day to the fullest. I know the feeling of "wanting to stop the clock." God bless you and family!

Irma
 

Gina

Distinguished member
Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
City
CAMBRIDGE
Hi Amanda,im with you i hate this damn cruel disease too!My husbands hands are like your father`s by the sounds of it.When he was still driving and we would go through a drive through i would have to lean over from the passanger side and give them the money and get the change as also it became difficult for him to hold in his hand without dropping it.Any fine motor skills are very difficult for him and we try to work around it the best we can.The als clinic gave us some sponge tubes that fit around a pen or his eating utensils which does help so you might want to see about that for him when you next go to the clinic.I am so sorry that he is having such difficulty speaking and you understanding my husband does not have that problem,thank god,his biggest problem is of the resperatory nature.My daughter is just a little older than you and she too is a daddys girl i feel So bad for you and her.She hurts so much too and i wish i could say something to make you both feel better or make this stop!Just keep venting whenever you need to and we will be here to listen...God bless all the children of als and especially the ones that are the caregivers.....Gina
 

JenniferS

New member
Joined
Oct 9, 2007
Messages
4
Reason
Loved one DX
Country
US
State
or
City
portland
communication

Is you dad seeing a speech therapist through the ALS clinic? My dad, who was diagnosed about 9 months ago, can be understood about 25% of the time. the rest of the time he writes or uses a communication device that is a keyboard that talks. His speech therapist helped him find one that is right for him and I think medicare pays for it.

Jennifer
 

Amanda529

Member
Joined
Nov 6, 2007
Messages
20
Reason
Loved one DX
Country
US
State
OH
City
Berlin Heights
Yes, my dad is seeing a speech therapist at the ALS clinic. We are schduled to go there again in April.
 

Clbrink

Active member
Joined
Oct 26, 2007
Messages
44
Reason
CALS
Diagnosis
11/2003
Country
CA
State
Ontario
City
Burlington
Speech therapy has made a big difference for my husband.

Try taking it one day at a time, enjoy what you do have!

I was always daddy's girl too, my dad is in SA, I'm lucky if I see him once a year!

Tina
 

Amanda529

Member
Joined
Nov 6, 2007
Messages
20
Reason
Loved one DX
Country
US
State
OH
City
Berlin Heights
My dad went to speech therapy from January- May of this year because at first they thought he had a stroke. But the speech has never helped at all. I am taking it one day at a time but it is extremely hard for me to not think about my future and that i will not be sharing it with my dad. :cry: Thanks for everyones replies i appreciate everyones help!
 

CindyM

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Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Amanda- don't let yourself thing too far into the future. Easier said than done, I know. Try to enjoy the time you have together right now. It is a trite saying, but I can;t think of anythign else to do, can you? :) Cindy
 

Amanda529

Member
Joined
Nov 6, 2007
Messages
20
Reason
Loved one DX
Country
US
State
OH
City
Berlin Heights
Hi Amanda- don't let yourself thing too far into the future. Easier said than done, I know. Try to enjoy the time you have together right now. It is a trite saying, but I can;t think of anythign else to do, can you? :) Cindy

Hi Cindy! Thanks, I try not to think so far into my future but it is not easy. I do enjoy the time i spend with him. I wish i could spend more years with him but i know God has a plan for him. I just dont know how to cope with this when i see him each day and i witness him going down hill. I stay strong when i am with him but once i leave i can't handle it.

How do other caregivers cope with this situation watching a love one slowly go down hill and knowing you can't do anything to help them? Please i need some advice on that to help me through this!
 

Gina

Distinguished member
Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
City
CAMBRIDGE
Hi Amanda,I wish their were something that i could say that would make this easier but the truth is this is just one hell of a nasty disease.I think we all struggle with that feeling of helplessnes .Thier are some days that are just so hard and you think you will never get through them but somehow you do...because well you really dont have a choice.I am so sorry that you are having such a difficult time coping right now!I hope it helps to know that you are not alone and given the situation your feelings are perfectly normal...Please feel free to vent anytime you need to we are here to listen......Gina
 

jackson

New member
Joined
Sep 25, 2007
Messages
6
Reason
Other
Diagnosis
n/a - family member
Country
US
State
PA
City
Harmony
Amanda - I am hoping that I can reach out to you. My mom was recently granted the ALS title also and in 10 months I have seen my once vibrant mom go so far down hill - I cry at the drop of a hat - not a day goes by without thinking what am I going to do without her! My heart broke when I read your posting - knowing that I feel the exact same way - somehow it gave me peace to know that I am not alone! My parents live in Northeast Ohio, almost PA so I even feel close knowing you are from Ohio also! I too am not sure how to make it through - I try not to ask my mom to repeat herself and I wonder when I hang up the phone if it will be the last time I hear her voice! I have yet to go try to get medication for myself - I think I am just fooling myself thinking I can make it! It is just torture to watch the decline I agree - I feel as though I am being a downer when someone asks about my mom and I just break down on them - I too am strong when I am with my mom, but my drive back home - approximately 1 1/2 hours is pure crying! My kids see me crying all the time, my husband just knows now - I am willing to lend the ear and shoulder - I do know how you are feeling - Jackson
 

Amanda529

Member
Joined
Nov 6, 2007
Messages
20
Reason
Loved one DX
Country
US
State
OH
City
Berlin Heights
Hi Jackson! Thanks for the reply. I know I hate to ask my dad to repeat himself and I also wonder when I hang up the phone if it will be the last time I hear his voice! Personally i would recommend going to your doctor and explain to them what is going on and you are battling depression as a result. The medication has helped but i still have my breakdowns at times but i am not as bad as i once was. I am here if you ever need to talk along with everyone on here.

UPDATE ON MY DAD:
Two weeks ago my dad received a communication device. Tomorrow he is getting the PEG tube put in and i am praying all goes well. I will let you all know how it goes. Thanks and everyone have a MERRY CHRISTMAS AND A HAPPY NEW YEAR! May god bless you all.
Amanda
 

Rachel

Active member
Joined
Oct 14, 2007
Messages
32
Reason
Lost a loved one
Country
UK
State
Essex
City
Colchester
Hi Amanda

Great news about the communication device, it should make life much easier for you and your dad. My mum used her lightwriter as her voice for the last 6 months of her life and my only gripe was (no offence!) it had an american accent :-D Only problem was, my mum's spelling wasn't too good which made for some great pronunciations at times!

Good luck with the PEG, hope it goes OK.

My advice for coping is to take each day at a time, tackle each challenge as they come along and cherish each moment you have. To think too far ahead just destroys you and takes your mind away from the present, which is the most important time for you and your dad.

Have a great Christmas & peaceful New Year.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Good luck with the peg today, Amanda. Tell Dad we ae rooting for him!
 

JACKIEMAX

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Joined
Jan 22, 2007
Messages
159
Country
US
State
TN
City
Baxter
amanda and others - coping

hello all,

i wish i could give some advice about 'coping', but i cannot. some days the only way i can get through the day is to 'pretend' we are normal, and he is not sick. that worked for awhile, but now he is declining rapidly. i am having to help him with very personal hygiene situations, i switch his oxygen /bipap about a dozen times a day, i have to be in the room with him 24/7 in case he chokes, sometimes on his own saliva.

he can still talk to me, but his voice is very weak. he tried to stand and use a urinal the other night and fell. picking him up was dead weight, and scared us both. next time he falls, i have been advised by his home health worker to call 911 immed., so they can help him up and check him out on the spot.

also, i rec'd a very very ugly e-mail from his brother in oregon today accusing me of trying to isolate him from his children and family bec. i wrote them all and asked that they shorten future visits due to his getting so tired easily. it was a very ugly and hateful e-mail. yet, not one of them have offered to come here and help take care of him, bring some food, and none sent him a x-mas gift. had it not been for my family and me, he would have had nothing under the tree.

thanks for letting me vent. my heart is broken in two, and i relate to all of you.

jackiemax
 
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