am i doing too much?

[lindasue]

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]

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]

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]

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]

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]

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 cukita99@aol.com . 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]

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]

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]

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 dx, 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]

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]

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 dx 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]

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

Irma

[CindyM]

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]

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]

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

[pmbenb83]

Lindasue ~ I'm so sorry to hear about your brother having this awful disease. My heart goes out to you and your family. My personal opinion is that he probably really cannot do as much now because he is so weak. Also, most men are too proud to allow anyone to take care of them, and for one to ask for help, there must be a reason. My husband's doctors told him to take it easy to preserve his muscles, so I'm not sure if not doing for himself is hurting him or not. You could always call the doctor's office and ask the doctor or nurse.

Jackie ~ I am so sorry to hear about your blood pressure. I think your doctor is right... you need to have a break during the day. It's kind of like the airline philosophy.... in case of an emergency and the oxygen masks deploy, the parent is to take the oxygen first and then give to the child. It sounds like you need to catch your breath, so that you can continue being the wonderful caregiver and wife that you can be. Please take care of yourself too. :)

My best to you both,
Pam B in Va

[cukita99]

jackie, u need a break. i have ALS n i have 2 pay out of my pocket 4 her help. she works mon. - friday but during the night she closes her door 2 her room n ignores my cry 4 help. i wake up at 10am n she gives me a bath, makes me breakfast n then she goes about her business comes 2 remove the plate, puts my computer in front of me n sits 2 watch tv n only if i need 2 i ask 2b taken 2 the batroom n she needs 2 clean me then back 2 my computer n lunch n dinner n bed at 10pm. she leaves friday at 4pm n i go 2 my parents house. my son helps my 79yr old mom take care of me. he holds me up n my mom puts the portable toilet 4 me. my son puts me 2 bed on weekends so its not 2 much 4 one person. i know we need lots of help n it wears the caretaker out. i give all the caretakers a lot of credit. if it werent 4 all ur help i would b more depress than what i am now. i try 2b nice but i know sometimes i am difficult. ur husband is lucky 2 have u take care of him n will understand that u need a break. hang in there.

[hearts_and_thoughts]

I have to say that I can relate to the burdens of full time care for my brother with ALS. He has progressed rapidly and is very weak and cannot do alot for himself any longer. He cannot help this. However, what I am learning firsthand is that as the caregiver, I must take care of myself. I also have high blood pressure for the first time in my 44 years. The weaker or sicker I get, the less I can help my brother with. My brother has to choose what things he prefers to spend his strength on. However, he also is learning to cut back his requests for help when it isn't absolutely necessary. I also am learning to set limitations. For example, he wears t-shirts in winter and gets cold constantly and expects me to keep adjusting his blankets to keep him warm. I have finally told him that he must put on long sleeved shirt because I will not assist with his blanket unless he does this. He gets mad when I set limitations and tries to make me feel guilty...tonight he actually kicked over his hospital table which I had to clean up mess because I wouldn't adjust his blanket as he sits in his wheelchair. That outburst didn't change my mind nor did his comments. There are things that "have to" be done and the constant blanket adjustment was not a "have to". It seems like nothing, but when your entire day is spent living and breathing for someone else's constant needs, those "small" things add up quickly.

Take care of yourself because you won't be good for anyone else if you don't!!

[lindasue]

thanks everyone for all your insights. i've come to realize that my brother is not asking for more help than he needs, he really is progressing super fast and really needs the help. jimmy was just diagnosed 8 months ago but i now brush his hair, help him dress, help him eat, brush his teeth, shave him, scratch his itches, help him from one place to another (he's using a rollater, not sure for how much longer), get him things, do his laundry, take care of his mail/bills, file his nails, etc, etc, all while babysitting for my 5month old granddaughter (only 3 times a week). i "snapped" (just a little one :-) 2 weeks ago, but have since managed to get it back together. every other week jimmy stays at our sister pams house, but during the weeks at her house i go over during the day and care for jimmy as pam works. i fear that i'm going to have to go back to work soon and we'll have to hire a caretaker as i've exhausted my funds and i have lots of bills.

anyway, jimmy is now very anxious about needing help to wipe after a bowel movement. he cries that someone is going to have to help him do such a private thing. i was looking at a gadget called a bottom buddy, but he thinks he would not be able to grasp the handle, so now i'm looking a special toilet seats that can be added to existing toilets, they use water / no wiping is necessary. is anyone familiar with these? do they really work? any better suggestions?

thanks!

[ZenArcher]

Lindasue let me say first off I know nothing of the product I'm about to post a link to nor any similar ones because to date I do not need them. There are bidet seats basically that simply replace the existing toilet seat which may help with this. An example of one can be seen here: http://www.gooddaybidet.com/cleanbutt-bidetspa1.html

That was simply the first one I found on the net so I know nothing of quality, price or features. I picked that one only as an example. I'm sure if you do some research you can find some more information. I went to Google and searched for bidet seat. Hope that helps.

[hearts_and_thoughts]

I've been told that the ALS or MDA clinics help with providing equipment. Perhaps they can assist with the bidet seat. Also, another thought, why I didn't think of this for myself, I don't know...would be to contact National Honor Society students to assist with household chores. They have to do so many hours of community service. This is tough at my age, I can't imagine how I'd do it full time at your age!! I am in awe at the energy you must possess.

I hope that you get some very needed help. Your brother wasn't a vet by any chance, was he?

Prayers are with you and your brother...
Mary Jo

[kelly]

My husband recently purchased a bidet..it has been a lifesaver...and allows him to maintain his dignity. Definitely a useful investment.

[sharonca]

Having read posts about bidet's before I did a search on the Home Depot web site. I think they are $400-$500. Didn't seem that difficult to replace the regular toilet seat with a bidet one. They even had a good selection.

Sharonca

[kelly]

I actually installed it all by myself...of course with my husband adding his two cents!!!!!

[AHands]

scratch his itches

Bless you!
My progress(? decline) has been quite gradual...so far my biggest daily challenges (arm onset) are things like dressing, picking up pills, but I fear, more than feeding tube or vent, the day I can't scratch an itch.

i'm interested in the bidet. i've never used one. i've traveled a little in india and bulgaria where "asian" or "turkish" options were available, but the ones i saw weren't quite bidet--more like a ceramic floor with drain and hose. even so, after getting over the initial culture shock of making do without tp, it seemed apparent to me that using water instead of paper made for far cleaner results--especially important when bicycling.

i think i'd like to have installed a bidet of sort that is generally useful, not just to the handicapped. recommendations?

[hopingforthebest]

Dear Linda Sue

You are a very special person and sister. I care for my husband and he thanks me all the time. His hands are getting useless and needs help with everything. Every single day my heart breaks for him. I still dream of his arms and hands working. He waves to me in my dreams and he is well in my dreams.

My prayers for all ALS patients and caregivers is for God to give us HIS strength, HIS courage and that HE give us scientists and doctors to find a treatment and cure for this horrible life sucking disease.

You are an angel to your brother.

Patty:)

[Elaine Ramos]

my husband has bulbar onset dx 2 yrs ago. he has 30%fvc and close respiratory failure. I kinda think he could possibly die before he loses use of his extremities. it sounds like your father did. docs want you to think he won't die until he chooses and that would be when he is fully paralyzed but i don't think so. i think he could die before he becomes fully paralyzed. any insight?

[Icanmanz]

Hi Elaine! Read your posts, and will try to reply to this one. Firstly, so sorry to hear about your husband's fate. It is hard on the loved ones, too. God will be with him always, and I know He will help him during this journey. I will keep him in my prayers. When my son was sick with this hellish disease I tried not to think about death. I focused on quality time with him, making him happy and comfortable. I knew he was dying, but I turned that over to our Supreme, it was in His hands. I only asked Him for guidance, strength, and peace for my son. I am sure our Father is doing the same with you and your family. I will keep you, your family, and husband in my prayers. Keep us posted. So you are from Burque, eh? I have been to the Sandia Mts. crest lots of times! God bless!

Irma

[Al]

Hello Elaine. Welcome here but so sorry you have to be with us. It is hard to be specific to your question because so many cases are different but generally speaking, most people with bulbar ALS will pass on before they are totally paralysed. I hope you won't be upset by my honesty but with a FVC of 30% that is not a good capacity. Cherish each day you have together.
AL.

[CindyM]

Hi again Elaine- I wish I'd read this before responding to your other thread about how you've had to cut back on work and $ is therefore tight. If his capacity is compromised you guys may qualify for additional help. In some states, Hospice will come in to help a couple of hours a day, or your area might have other resources. Call the social worker at your ALS of MD clinic to see if they can help. :-D

[hearts_and_thoughts]

Lindasue,

How are you holding up? Do you have any help yet?

Mary Jo