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Mar 13, 2006
Hey there!

I apologize if this post rambles and is hard to follow, but I really need to vent and you guys are so awesome at giving me advice!

I'm trying to figure out how to achieve a balance between feeling mad/sad/worried and having acceptance. I know that I shouldn't expend a lot of energy trying to control things that are simply uncontrollable. But saying this and doing this are two totally separate things. I have been enjoying organizing the team for the ALS seems to give me hope. But then there are times that I'm filled with such saddness for her, her husband, my parents, me (which I see as being totally selfish and wrong), my daughters, etc. I read another post about driving nails into a board...I may have to try something like that. Does anyone have ideas or advice about how to achieve a balance? Teh whole thing still seems so surreal!

I see my sister struggling more and more both physically and emotionally. She is starting to need more help, but sometimes has a hard time accepting it from others. We are throwing her a Garden Party to help plant flowers and veggies. One of her comments was "It's nice that my garden will look nice one last time." She also has said that she thinks people are viewing her as a "project" and that the ALS will last too long and they won't want to help anymore...especially once she's not so "charming" (her words...not mine). She seems to be focusing on the things she can't do anymore. Less than a year ago, she and her husband went to the Pyranees on a yoga vacation. Now she can't do the standing positions anymore and actually fell and sprained her ankle (the good one) while doing a modified pose. Because the exercise thing doesn't work anymore, she's gaining some weight. So now I've noticed that she says 'no' to foods that she loves because to me it seems as if she's counting calories. I told her that "fat guys live longer"...she laughed, but didn't seem convinced. She's looked into disability retirement, but since she doesn't know how long this ride will be, she doesn't know which package to select. Plus, she would need to drain her sick leave (all 36 weeks of it) before she could retire.

I don't always know if what I say to her is the right thing or not. I also don't know how to help her focus on what she can do and not on what she can't. I don't want to make it seem like we have to cram all sorts of fun things in now, but yet I want to spend all the time I can with her. This whole thing is just SO frustrating!

Anyway, again I apologize for rambling on...but I had to get some things off my chest. I look forward to hearing your comments and advice. Thanks!


Marcia, Marcia, Marcia.......( isn't that a line from the Brady Bunch?)

I sometimes think you and I are living the same life. I am so frustrated, mad, sad, devastated, pissed off, exhausted, right now, I could scream.

Gail is progressing too, and had two falls over the passed weekend. my heart aches for her. I suggested that she start using her cane for support, but suggesting that hurt her, she is not ready for it yet. I am usually a confident person, but every time I leave her, I am concerned about whether I said the right thing or not. I try to listen and not talk. I can't stay silent the whole time i am with her.

I had lunch with her today and left feeling unsettled. She feels that I have "written her off" (her words not mine). She feels that I think there is no hope for her to fight this. Which is not true, I have to face reality, if I am going to find peace and strength within myself to help her fight this and/or deal with this. I don't know how long she has, no body knows. :? I don't know why she feels this way, who knows.

With regard to your question on balance. I have tried ( I repeat) tried very hard to have ALS Free days, where I stay away from the forum and the walk a thon etc. But it is hard to do. I might be driving in my car and it pops into my head, boom there it is again. There is no escaping.
I give myself little pep talks that I am doing all I can to help her and that I will find the strength to be there for her no matter what, even when she is not so "charming". I am listening to her way more than talking and am taking all the advice given to me over this forum. I am determined to give this my best. I find my strength knowing that I can make a difference in her life, by keeping her happy, laughing and doing with her the things she loves best. That is what keeps me going.

I think you are an amazing person and love your sister very much. You might not feel you are doing or saying the right things, but I am sure you are. Remember to take care of yourself.
How are your children dealing with this? I haven't even breathed a word to mine yet. I am not looking forward to that day, I will tell you.

stay strong Marcia. We will get through this because we have to. remember I am here whenever you need anything. I will give you my phone number if you want it. What ever. I am sure your sister thinks you are amazing.


Barb :?
I think you're right...our situations are so similar and the things you described parallel my emotions and frustrations perfectly! I haven't tried to have "ALS free" days...quite honestly, I'm not sure it's possible. Like you said, my sister pops into my head at various times during my day. I wear visual reminders of ALS as signs of support and hope. On my right wrist I have two red wrist bands. One says "Strike Out ALS" that I ordered for Kathy's family and friends and the other says "Never Give Up" that my nephew gave to all of us. On my left wrist I have a bracelet given to me, Kathy, and several of her friends as a sign of a circle of friends that will be there for her no matter what. The red bands stay on matter what. The other bracelet only comes off when I shower. Yes, they're reminders of ALS, but I also know there are so many other people out there wearing them at the same time. They bring me comfort knowing that there is a HUGE support network out there.

My kids are doing okay...although I'm not sure how much they realise. Kjerstin, my 6 year old, commented one time about Kathy dying from ALS. I know that she understands death to a certain degree. Last June we lost our 13 year old black lab, Molly, who died in her sleep. So Kjerstin knows that death means that the person or animal is gone and isn't coming back. When Kathy was diagnosed, we took the opportunity to talk about Molly a lot to show that even though she was gone we could still love her and remember her. Kjerstin also wears two red wrist bands everyday...but hers are on each ankle. If anyone asks her about them, she pipes right up and talks about Kathy having ALS. Karin, my 9 year old, isn't as vocal about Kathy's condition, but that's also her personality. She reads my emotions quite effectively and knows when I need a hug. Almost every Sunday when we're praying in church for those who need healing I start to lose it...not a lot, but I get choked up. Karin's right there and gives me a little squeeze. I keep forgetting to get the name of the books that one of our school social workers gave me. I will try to write myself a note to bring them to school tomorrow so I can get that info out to everyone here.

It's so good to know that my feelings are normal. Sometimes it's easy to feel isolated with this. It's good to vent!

Thanks so much!
very inspiring


I watched your video and found it very inspiring. You have a terrific attitude and I hope I will be able to sort things out and feel the way you do, in time.
Thank you for sharing it with us.



The video is available here: <-- Gerald's Video
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I also thought the video was great. Well done Gerald!
And they weren't trying to sell you anything. Bonus.
Count me in on my life paralleling yours - at least it sounds that way.

My younger sister was diagnosed a year ago this week. She's the favorite aunt and I'm dreading telling my girls - even though they know somewhat...know that she has something wrong that's causing her hands and legs to not work correctly.

My sister is shutting herself off from everyone and her husband is bearing the brunt of everything. She won't even let me grocery shop for them. The most she accepts is babysitting for their 2yo when she goes for treatments. She doesn't want to go back to the ALS society because "they'll only show (her) ways to adapt to living in hell." And she doesn't want to live in hell.

It's SO hard.
Welcome to board Mom Nancy. I hope you find some good advice here. Even though it's been a year, perhaps eventually your sister will come around to accepting more help, or her husband will get tired and frustrated and will ask for help. She sounds like she might be depressed, and overwhelmed with a toddler, too? Hang in there.....

Welcome Mom Nancy

Hi Mom Nancy:

I can tell you I am in your shoes, my husband also shut himself from his friends, he only see's one, who's been his friend for a little over 50 yrs. they met when they were seven yr. old.

I'ts been hard for me, since I am his 24 hour caregiver, our daughter and son are busy and don't come very often.

He has terrible pain in one of his shoulders but refuses to use painkiller's, so we live at night because he cannot go to sleep. He sleep's more hours during the day, but I am all worn out because I have to do all my chores, besides I take care of three German Shepherd dogs.

I don't regret taking care of him, it's only that most of the time he's depressed and when I see him like that my heart breaks in little pieces.

He started symptoms a year ago, and right now he can't move his arms, hands, he can't sit by himself, and cannot walk, his voice is getting hoarse and sometimes it's hard for me to understand what he's trying to tell me, usually when he's resting in bed.
He gets real angry, and this is so frustrating for me.

It was very good for me to find this place, where everyone can vent, to get relief, since you cannot talk to just anyone since they don't understand what we are going through specially if our PAL refuses to see people.

We've been married 35 years and we love each other very much.

By the way I am from Mexico.

God bless you all Paty
Paty....Sounds exhausting for you....I can relate to your is so hard as a caregiver to have to abide by the choices of our PALS, especially when they dont exactly make sense to us. My husband also wont see most visitors anymore (just his family and a couple friends), and I find it hard to act as his representative to everyone and try and explain why he doesnt want to see them when they request visits....but that is his wish and I have to respect it. I think it would cheer him up and ease the boredom, but I guess that is if I were the patient---but it's not not the right thing for him. Also, he wont take pain-killers for constant pains in his back and shoulders and that drives me crazy! He wants me to massage him all the time, which is hard when I am so exhausted.
So I like to use this forum to complain and kind of feel sorry for me! I dont do that with our family and friends--we are so concerned for him, as he suffers much more than me. I hope you can do that too---glad you found us.
By the way, we spent several months in Sonora after my husband was diagnosed. San Carlos area--very nice...we even went back with his wheelchair for a month in Dec 05 and found it easier to get around then we anticipated. It was the very end of his eating and he got to eat all his favorite Mexican foods for the last time.
Buena Suerte to you. Beth

It is comforting to me to hear from other caregivers/wifes that they struggle like I do. My husband is angry and depressed most days (who wouldn't be) but at times it is hard to live everyday in that state. He is in a lot of pain but he will take the pain killers in fact he takes several types. Eating is hard for him and he refuses a bi pap, the only meds he will take are for pain. Somedays I wonder if I will be the first to go.
Hi 0204. Caregiver burnout is a real problem and you have to realise that you need some time out for yourself. There are ways to get respite care. You should be looking into it. Take care of yourself too.
Make it easy on your caregiver.

I am the patient & my 69 year old husband is my primary care giver. He still works (he's a forester) & I think that helps keep him sane. I do every thing I can to make his job easy; it is heart-breaking enough to see what this is doing to him, our children, grandchildren & friends. I don't complain (I can't-what speech I have is unintelligible). I
have to write everything down & it's not worth the effort to write anything negative. We have help who comes 3 days a week for 3 hrs to clean & do laundry. We have friends who are faithful & bring meals. We live in a small town & have for 35 yrs. I could have more help from friends, but it is not easy asking--I'm learning. Plus, I call myself "saving" them for when it gets worse. Truth is, it's pretty bad right now, so I'm telling you friends, because if Billy knew how I really feel, it would devastate him. I didn't expect to feel this rotten so soon. I'm 16 months past diagnosis. I was the most fit of any one; worked out, traveled, taught. Now everyday ALS takes something else away from me. NO ONE should have to experience what this disease does to you.
But I smile & count my blessings--which are many. Love is the main answer--love too much to make others miserable. Look for joy where you can find it. My husband has turned the back yard into a garden--flowers, bird feeders. My 44 yr old son comes & helps his Dad with the heavy stuff & visits with me. The most common phrase heard around here is "I love you." I hope something I said helps someone somewhere. I love all of you fellow sufferers & everyone of you precious caregivers.
Hello Southern Lady,
I am also the patient and my 67 year old husband is my caregiver. Your words describe my life as well. It is hard some days to keep smiling, but I love my family too much to be negative and complaining.
I agree that love makes the difference, love and faith for me.
I agree, it is very hard to ask friends to help.
We do not have any help at all now, but will soon have to have someone to clean at least. my husband cannot continue to do it all.
I can still bathe and dress myself, but that is getting more difficult.
Thanks for your post, it helps when people share their stories.
Hugs and prayers,
Beautiful New Brunswick

My husband & I have been to New Brunswick, walked on the bottom of the Bay of Fundy, picked up stones on the beach at Cape Enrage. Precious memories! The multi-colored stones are still in my back yard near the fountain. From time to time, playful little hands put them IN the fountain. When ALS is beating up on me, I meditate, go in my mind back to happier times & places. Sometimes, like last night, I just call out to God, "Please help me." And He does. His mercies are new every morning. We will be here for each other. Tell me when you have a good day & tell me when you have a bad day. I totally understand. Love from Alabama, Mollye
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