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lindasue

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my brother Jimmy (54) was diagnosed with ALS this past July (2007). his was a fast onset and seems to be a fast progression. he lives in st louis, i live in springfield, il. the cold weather affects him very badly, so he is staying with me and sometimes with another sister (also in springfield) for a few months. we seem to be doing more and more for him, and i wonder if we're doing too much? he seems to be so weak anymore, i hate to deny him when he asks me to do things for him. i brush his hair, i help him dress, i cook for him, cut up his food, many times feed him, now i'm even brushing his teeth for him. has he given in to the disease? he seems to sit all day in front of the tv, only getting up to go to the bathroom. he uses a walker in the house, if we take him somewhere we push him in a transport chair (thank god for the ALS & MDA loan closets!). i'm not complaining about doing so much for him, i know that he may not be with us much longer and so i am happy to spend so much time with him. i just worry that i've become an "enabler" and he is losing strength because he's not doing anything. any insight / advice would be greatly appreciated. thank you all!
 

Gina

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Boy lindasue i wrestled with that also with my husband he sounds a lot like your brother.I dont know what was going on in his head but i think it made him feel better somehow for me to do those things for him.He also just watched t.v. most of the day and back and forth to the bathroom.If it gets to be too demanding on you then you might mention it to him otherwise just use your own judgment!Some how i think also he might have been more scared when i was not around so he would think of things for me to do....Sometimes i would feel like i was loosing it b/c thier was very little time for me.I cant say about the losing strength quicker by not doing anything.Maybe someone else has input on that i think the disease will probably progress at the same rate by i am definatly no expert on that........prayers for you and your brother....Gina
 

Icanmanz

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Tomball
Hi lindasue! I am so sorry to hear about your brother, and may God bless his heart. I have been around a Pals, my son, he is no longer with us. When he was first diagnosed with this terrible disease, he used to tell me that he wished that God would call him Home before he would lose his strength, and all mobility. I told him not to worry, that I would take care of him, and I did. I am so sorry for what you are going through, and for your brother, too, ESPECIALLY HIM! These folks can no longer function once this damn disease has progressed so. We really cannot blame them, and I know you are not taking it out on your brother. What are we to do? We either give them a hand, or we don't, and I would do the latter. It is HELL to even try to put yourself in their shoes. I know you are doing all you can. May God bless you! I may be hated for saying this, but "Patience" is God-given. Prayers to you, dear, and may God bless you, and your Pals!

Irma
 

cukita99

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PALS
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try 2b patient believe me nobody knows what we go thur. i have als im 53yrs. old n i cant walk, speak n my hands r weak. i have a caretaker but i feed myself. i still use my finger 2 type. i 2 sit in front of the tv but i use my computer while the tv is on. its not that i want people 2 do thinks 4 me its that u use 2 much strenght n i rather use my strenght 2 eat by myself. i hate 2 other people n i sometimes ask GOD 2 take me but i have an 18yr. old son that still needs me even if he has 2 help me.
 

lindasue

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i didn't mean to sound like i was complaining, not at all. what i meant to say / ask is "should i encourage him to try to do more or is he doing everything he is capable of?" i don't want his lack of strength to be because i do everything for him. i want whats best for him.

thank you all for your responses. cukita, yours was especially helpful!
 

cukita99

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i think he should try 2 do things 4himself if he can. i try first n then if it is 2 much or i cant, i have them do it 4 me. i have been fighting with these disease 4 5yrs now. sometimes i break down n cry but than i say as long as my brain works im ok. mayb ur brother would want 2 talk 2 me. if he wants he can email me at [email protected] . it helps me 2 talk 2 people like me. i would love 2 talk 2 u or ur brother. i would love 2 have a brother like u. i have a big family but only my parents do things 4 me.
 

Icanmanz

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cukita, I read your post, believe me it brought ters to my eyes. My son never complained if front of me, because he did not want me to worry. He was a little toughie. I watched him suffer in silence, while I cried in silence. I hate this damn disease. I will be praying for you, dear. Thanks for the post, we really needed to hear it from a Pals. God bless you. Keep us posted.

Irma
 

cukita99

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Irma, i want 2 thank u 4 ur prayers. my famil think i am strong but i am not. i just thank GOD 4 each day i wake up. the nights r the hardest.
 

kmgy

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cukita,

Thank you so much for posting. Reading your post brought tears to my eyes, as I remember my father when he was fighting this horrid disease. He never wanted to bother anyone, and did as much as he could himself. he had bulbar diagnosed, and he was able to walk and use his hands - minus some finger usage until the day he passed. The talking and breathing affected him the most, the breathing being the worst. He did not like being alone when the disease progressed -

linda sue- i agree with gina in that maybe he is finding things for you to do to keep you around more, maybe he is scared to be alone.
 

Icanmanz

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PALS
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Tomball
cukita, hi sweetie! Sorry it took me a while to reply, but I was away from the computer for a while. It made my day, when you replied. I thank God that you got to read my post. My heart goes out to all Pals, not because it hit home. The real reason is that I saw for myself how dreadful that disease is. It struck my firstborn when he was only 37, but I am sure he had the symptoms earlier, but he kept quite a bit to himself, until it became obvious. It is so sad to watch your loved one succumb to this damn disease. When I learned that my son had it, I put EVERYTHING on hold. I did not, and could not smile for a very long time, I did a lot of crying (in silence, mostly). I had a very hard time accepting this damn disease, a very hard time. I wasn't me! I did not know who I was! I know who I am now. I am a mother who turned to our Father for guidance. I am a mother who begged Him to take him Home, because I could not stand to see him suffer anymore. What good was it going to do me to want to keep him here with us when he could not speak, he could not eat, he couldn't walk, his volume was down to zero. It would have been selfish of me to want to keep him here. When he left us, I felt comforted with such peace. He is no longer suffering, he is no longer here, but hey, his memory is very much alive, and I am moving on, because that is what he would have wanted. I will be praying for you. As of today, you have been added to my list. Thanks for sharing your email with us, I will email you soon. God bless you, and I feel like I already know you!

Irma
 

JACKIEMAX

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caretakers, please let me vent

some of you remember me altho i have not posted in awhile as my husband has als now for 2 years, and is at the point that he can do very little for himself anymore, and i can barely find a min. to get online to say hello to my siblings ea. day to let them know how we are. i have been wanting to get on this particular caregiver's thread and 'vent' a little, and it was about this very first posting i came to entitled 'am i doing too much?'

my husb. had a great deal of physical strength and dignity when first diagnosed a year ago, altho had symptoms for one year previously. he had limbonset and it has progressed very rapidly also.

he walked as long as he could, even on a walker, he cut his own food as long as possible, and struggled up until one month ago to wobble to the bathroom on a walker. now, we have his hosp. bed, rocking chair, and portable potty chair lined up in a row in the den, and i sleep on a couch (getting very little sleep) as he gets panicky if i'm out of the room. he cannot even wipe himself now.

can you just imagine what is going on in their minds, which are not affected by als, when a loved one has to do all these things for them? somedays, i run myself ragged trying to take care of him, me, laundry, meals, etc. and he is at the point now that he is frustrated and gets very impatient with me, but i understand it is not intentional or personal. but.... let me tell you - all this is taking it's toll on me, the caregiver. i went to the dr. yesterday and had to pay an off-duty homehealth care cnt to stay with him, as i had gotten a staff infection on my left hand for not using latex gloves taking care of his hygiene with bms.

my blood pressure yesterday was 220/90 and i tho't i'd pass out when the nurse told me. after talking to a kind, caring dr., he retook it and it was still 190/70, the highest it has ever been in my life. i am 70, and in good health except for arthritis.

the dr. told me to pay that home health cnt to come at least once a wk or once every other wk, and pay her whatever she wanted, and me get out and get away from all this chaos and craziness, or i'd end up in the hosp. she is the only one i trust him with bec. if he gets choked on phlemn, or had to use the potty, he would not be so humiliated as to have to have a family member help.

i told the dr. somedays i wanted to scream and scream. i am soooooo tired. but he did not ask for this disease, and i feel i have it too, only mine is wearing me out, and his is tiriing him out.

thanks for letting me vent. jackiemax
 

Icanmanz

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jackie, I do remember you, and thanks for sharing. God bless!

Irma
 

CindyM

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Learn about ALS
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Hello Jackie- your concerns are always accepted here. I am sorry this road is to tough for you right now. Sometimes I wonder where PALS and CALS find the strength!:cry:

Regarding doing too much for a PAL: this is an interesting topic. We are often taught to "fight" terminal illness. Does it work? Maybe. Maybe not. Can one slow down the progression? Can one "give in" and make it the inevitable come sooner? I suspect the answer is yes and no. I am not sure you can fight some things. But I am sure that giving up brings a faster result.

You say he watches TV all day. Is there anything else that he is capable of doing? I think the key lies in the answer to this question. If he can hold a deck of cards, hold a book, handle a garden tool, then maybe you can re-evaluate how much you do for him. But if his toothbrush is to heavy, then what choices do you have other than to get some additional help? Sometimes it just is what it is, unfortunately.

JMHO. cindy
 

JACKIEMAX

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do we do too much? by jackiemax

thanks girls, for your posts. my husband's passion was bonsaiis, landscaping, and anything outside. that is in the past never to be gone there again for him. his fingers will no longer let him trim bonsaiis, he has a 'specially made fork and spoon' to eat with, but cannot brush his teeth. therefore, home health provided some little pink swab-like squares on a stick to wet and let him clean out his mouth and get the bacteria and plaque out.

he can still hold a pencil and works on sudoka puzzles in the paper each day, but cannot take 3 steps to his bed without a walker and me holding from behind. he can no longer clean himself after a bm.

therefore, i don't feel he's given up at all, but it hurts him really bad to have to ask me to do so much for him, but it can't be helped.

he can only get off his bi-pap 3xs a day to eat, then right back on which means he can't talk and he gestures a lot, and when i don't understand immediately, he gets impatient. i do understand that he is the one with the disease and that he has to watch his body deteriorate, but my blood pressure was 220/90 two days ago at the dr's office, so i am suffering too.

thanks for letting me get this off my chest. no one else to say this to.

jackiemax
 

nspoc

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Mar 24, 2007
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CALS
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Illinois
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Olympia Fields
Hi Lindasue -

Boy is it hard to answer your question. My PALS Pat does everything she can for herself. But I have to clean her, help with toothbrushing, her hair, makeup, trim her nails, allkinds of personal care. She would do it if she could. She did too much for too long by herself - had some dangerous falls.

I would have said that if they ask, they need the help. But since being on this forum I have learned that some people are manipulative, some are demented and some are mean.

But overall, my experience of this disease is that PALS cannot do very basic things like comb their hair, even scratch an itch. Only you know what your PALS used to be like - but I lean toward the posityion that most people really need the help. If anything they ry to walk past their ability and fall - breaking bones, causing bleeds, even dying.

I know this is not a great answer - but most PALS wish they could do more for themselves, and do not want to be as dependent as they are. Also - it is not good to push physically -lost muscles cannot be regained.

Jackiemax -

I have followed your posts closely. You have been a wonderful, kind and devoted caregiver. It breaks my heart to hear what is happening with you. You have been a source of strength for me - I wish I could be that for you.

Please know that you are in my thoughts.

Beth
 
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