Old 09-10-2006, 08:46 PM #1 (permalink)
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Default AGAIN on Bowel movements

Hello to all,

This is Shelly from Southeast Wisc. I haven't been around because I have been very busy taking care of my mom (she is who has ALS) and my children have been out of school for the summer. They just went back... :-} No mixed emotions on that, I'm glad they did go back to school only because I have not been able to spend "quality" time with them and that breaks my heart.
Mom and where she is with HER ALS: She is barely able to walk anymore, she uses a walker. Today I had to lift her legs because she didn't have enough strength to do so to get into bed. She's been on a feeding tube since Oct 5th of 05. She is still coughing and gagging regularly but refuses to use a suction device. CURRENTLY we have the problem of repeated BLADDER INFECTIONS, why? She has loose (watery) bowel movements, BUT are the loose stools because of the repeated antibiotics for the repeated bladder infections. WHO KNOWS? We (she) can not get rid of one to get rid of the other. Rrrr She is wearing depennds at all times now but they DO NOT hold in a watery stool. Sorry to be so graphic but this is very frustrating. We have tried the anti-direaha pills, nope that don't work.
Any ANY words of wisdom would be greatly appreciated. Thank you to all who listen to the venting and pleads for help. My mom keeps EVERYTHING to herself, she will not speak a word about her ALS. Not that she can speak anymore, she is still able to write but that is also on the downward slide.

Shelly
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Old 09-10-2006, 09:10 PM #2 (permalink)
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Default Bowel movements

ShellyRenee- I had that problem 2 years ago for ouer 30 days . I started on probiotics which puts the friendly bacteria back in your Colon. It took about 2 weeks to start making a difference. My B/M are better now then they have been in 40 years. Most health food stores carry the Probiotics. Howdy
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Old 09-10-2006, 11:03 PM #3 (permalink)
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Hi Shelly. This is going to sound strange but have you tried Metamucil powder? Most people take it as a stool softener but I was told by my doc once it also puts bulk back into your stool. You can mix it with orange juice and it doesn't taste bad. Might be worth a try and is a bit more natural than Immodium and the others. AL.
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Old 09-11-2006, 10:17 AM #4 (permalink)
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I Have Been Told That Rice Water Is Great For The Runs... Cook Rice And Reserve The Water... Also Charcoal, Available In Capsules Is Also Very Good.. Wishing You Success
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Old 09-11-2006, 11:11 PM #5 (permalink)
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I would agree with Howdy that your Mom probably needs some probiotics to get her intestinal flora restored after the antibiotics....acidophilus, lactobacillus, etc..they have some good mixes available. This is very common and you will be pleased with the results for the stool problems....may take a week or two to get totally healthy in GI tract again. The bladder infections---is your Mom getting enough water and fliuds through her PEG?...our dieticians really underestimated the amount of additional water to give my husband and we ended up doubling (!) what they recommended in order for him to get properly hydrated...maybe get a second evaluation of her fluids. Plus Im sure her docs or someone has advised you to use cranberry juice (or can get powdered extract) to prevent/help treat bladder infections? Hope so. ..look into it...it changes the PH of the urine and makes an environment inhospitable to the bacteria.
Good Luck...Beth
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Old 09-13-2006, 09:38 PM #6 (permalink)
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Default Bowel Advice, thank you

To all who responded I say thank you. As I have said many times this is one heck of a roller coaster ride. Most of the time I feel so helpless and then there is Mom.... She is "bucking" this all the way. She will not breath one word about her condition, not like she is enjoying it either. BUT I want to help her I want to make life a little easier for her if she would only open up. The only time she seems to be happy is when I am doing something for her or shopping for her. Almost like a spoiled little kid. I am over to my parents house caring for her 5 days a week from 9 to 4:30 and then on the weekends from 9 to 11:30. When I don't get something done (cleaned) I hear about it, but who is taking care of my home? Honestly she does NOT care. This is what I don't understand the more attension I give her the more she demands of me and I CAN NOT tell her no. Can you tell I am frustrated with her? Only because I feel like she will not let me help her to help herself. Clam up denial.....

Now to the Bowel Advice, the Metamucil thickens up and we have a fear of it plugging her tube. Not to mention that until ones body gets use to it they are "gasy". Imaginations: gas and diarea could be a nasty explosion. Sorry for the icky details. The water advice (bladder infections) only seem to make the diarea worse. But hey the news of today is SHE HAS NOT HAD A BOWEL MOVEMENT since I posted my last post, what 3 days ago?! Now she will probally go the other way. So then what? How long do we wait for her to have a bowel movement on her own? And of course she will not tell us when she does so I have to ask her everyday a couple times a day. Kinda funny at times because she will look at me as if I am annoying her, but what am I to do?

Mom seems to be losing more and more strength by the day. She can not get into bed by herself anymore so we have to help. The other day I was trying to help and I stumbled for which she thought was funny. When she giggled she tilted her head back and then she could not pull it back up. I cried the whole way home, good thing I have a 25 minute drive.

Now that I have rambled on I don't know if I'm ready to cry some more or that I'm excited that I got it off my chest, even if nobody reads this. God Bless all.

Hello to Pat if you are out there.

Sweet dreams to all,
Shelly
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Old 09-13-2006, 09:55 PM #7 (permalink)
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Lots of us read this Shelly.
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Old 09-14-2006, 10:11 PM #8 (permalink)
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Hello Shelly. I read your post - and my heart went out to your mother - and to you and your kids. Please take this the right way - but sounds like you need to have relief. The toll is huge on you - and seems huge on your kids also. You are on this for the long run. Your mother, who is dealing with her condition in a very stoic way it seems, must be feeling a conflicting range of emotions knowing how you are doing to take care of her. Is it possible to find assistance so you can have a break? As well as, to just be there with your mom and sharing time rather then always doing the nuts and bolts care.

Perhaps others on this listserver have recommendations on how insurance works, or other avenues for support? I am on learning curve myself re ALS, figuring things out on how to be there for my brother and his family.
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Old 09-17-2006, 05:57 PM #9 (permalink)
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Susan, thank you for your kind words. There are a few things you may not know regarding our family and mom having ALS. First, mom is really my step mother. We never really had a close relationship BUT we did not have a bad relationship either. The kind of person I am is what gets me in the spots I'm in. I can't help be sad for her, I want her NOT to be sad, I wish she did not have to go through this. My family has never been good at showing emotions. THIS IS WHAT I FEEL IS THE BIGGEST PROBLEM. My "mom" does NOT want ANY OTHER help coming in her home, NONE. Hospice comes in 2 x's a month and she will not allow them any more. Now this makes her sound voiceturous (sp) but that is not true. She will shake her head "NO" or write "NO" (she can no longer speak) and will leave it at that, no explanations. She will not discuss how she feels or what is going on with her. Another example: my parents (my dad) decided that they were going to pay me X amount of money to come over there daily to help her with daily things and cleaning my dad told her today to give me some more today and she shook her head as to say NO. No explanation just no.... Now the angry me would say (really only think) pee on you do it all yourself lady, BUT I couldn't or wouldn't. If she was healthy and I did all the things for them as I do I would definately tell her that. Part of me thinks she is angry at ME & part of me thinks she is being very selfish. Then there is HER two children, boys 42 yrs. old & 40 yrs. old. They come see her MAYBE one does once every 2 months and the other (the oldest) every 4 to 5 months, with no phone calls at all in between. Might I add they only live about a half hour away. A phone call would brighten her day, make her smile and that would be AWESOME. Granted she can not talk but they can call my dad and he would relay a message of "hey tell mom hi for me and that I love her and was just thinking about her". When they FINALLY do visit she lights up. Honestly this really stinks...... Out of respect for her I will not say anything to them but this is not fair. So I keep my mouth shut and I keep taking it because THIS IS THE KIND OF PERSON I AM. As for my children, I look at it as she is not going to be around much longer (MAYBE til christmas) and I can hopefully make it up to them. They are little, I have a 9 yr old with special needs and a 5 yr old who just started school. For the most part they are at school while I'm taking care of mom. Plus, someone once said God only gives us only what we can handle, hmmmm how does he know how much one can handle. I think I'm gonna have a talk with him.

WOW, did I go on and on. Very very sorry. Again I think I went on venting too long.


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Old 09-18-2006, 12:57 AM #10 (permalink)
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Hi Shelly. Sounds like you have your stuff together. Your "mom" is lucky to have you. Brothers can be a pain in the butt. I know because I am one so can say that. Just try to do the best you can and someday you'll get your reward. Don't worry about venting here. We all need to do it once in a while. AL.
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Old 09-20-2006, 08:44 AM #11 (permalink)
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Default Thanks Al

Al, thank you for the kind words. That means a great deal to us who do not have ALS but are dealing with a loved one who does.

As far as my "brothers" go again I thank you for the kind words. I will be seeing them this weekend at my parents house because mom will be celebrating her 65th birthday, I have decided right, wrong or indifferent I am going to voice MY feelings to them. Please excuse me but they are being chicken sh--! Mom acts like it is no big deal, infact she never says anything, BUT we see how she lights up when they come around. I don't get that kind of "light up" haha. So as for a reward I need none, I am perfectly fine with who I am and how I show my love and thankfulness to my parents. Hopefully they will get their REWARD for who and what they are........

Gotta go, off to see mom for day. Have a great day. Hope you have some sunshine there. We do TODAY only. Look out here comes the dreaded winter, burrrr.

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Old 09-20-2006, 09:56 AM #12 (permalink)
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Smile Hi Shelly

Sounds like you are doing all you can do. Just watch out for burnout for yourself. Care givers sometimes go so long without a break that they just "break". If you get what I mean. Take care of yourself, you have a life of your own and need to take care of your own emotional needs. Take a day or two to go do something fun where you can just forget about ALS for a day at least. It will recharge your love batteries and help you over the long haul.

Remember you are not along, come cry on our shoulders anytime you need to.

God Bless
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Old 09-20-2006, 12:29 PM #13 (permalink)
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Shellee:

I can see that you're going through a hard time. It sounds like your stepmom is fighting
the illness by acting in a passive/aggressive manner with her caregiver. She doesn't know where to focus her grief, anger and disappointment where it will do any good to alleviate her illness, so she's targeting you.


I can easily imagine finding myself in the mental condition of your stepmom. I bet she knows that she's not being exactly fair with you but cannot seem to help herself to behave otherwise. Have you tried a direct approach? ("I want to help you but I need you to communicate with me more." or "Is there some reason you don't want the hospice people here? Perhaps we can address your concerns.") I suspect you need to find a way to help her to communicate and break out of the cycle without losing face.

It's not easy to be caregiver in any circumstances, but the psychological pressures you're facing in this particular situation are particularly difficult. I sense that you
feel guilty for feeling resentful. Anyone would, however.

Anyway, these were just some random thoughts I had upon reading your posts.
Best of luck to you.

M

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Old 09-20-2006, 05:22 PM #14 (permalink)
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Hey Shelly. I have noticed how mom's boys are the "light" of their life and the daughters are the "daughters" My wife's mom is the same way. I've seen it elsewhere, even on TV shows and not the reality shows either. You are not alone! AL.
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