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Active member
Jun 23, 2005
Hello to all,

Sometimes I feel like dad and I are the only ones dealing with this. Then I will escape to my basement to see if there is any new post, just to kinda reassure myself we are not. So, a big thank you to all who share your thoughts, anger, confusion, tears, laughter, kind words and advice.

Last night I sat down to read some post when I started to read one from Pat, before I knew it the tears were running down my face. Thoughts going through my head of why am I crying I do not know this person but I felt her pain. I know she had (has) pain the SAME as I do. Her love for Jack, my love for my mom (stepmom but MY MOM) is the same, no different. I wish I could sit and talk for hours with people who are dealing with this same cruel disease. Yes, I do know there are support groups but mom does not want any part of it, besides that the nearest group is 45 to 50 mins drive time. That is 1 1/2 hrs. of drive time (sanity time I call it) that I unfortunately don't have. Having small children and a husband and then running to my parents house 2x's a day doesn't leave much time.

Now that I really got off base of the real reason for my post, sorry. Moms feeding tube was put in on the 5th, what a sad sad day. Mom cried everytime we made eye contact. Talk about breaking my heart, all I wanted to do was to take away her pain emotionally and physically. The hospital sent her home on NO PAIN MEDs and NO INSTRUCTIONs on how to use this feeding tube. The surgeon sent a prescription for us to fill for tylenol w/ codene, liquid. She could NOT take it. The hospital said Home Health would come out to the house to help, well since she already has Hospice the good ol insurance co. said oh no not both. Mom went home at 11:00 and cried and suffered until Hospice could get there at 3:00. I was so angry at all, for the confusion, for making mom suffer and for making my mom cry. You can believe I was on the telephone telling off some people. You treat people like that. All I would get is "we are sorry for the confusion". EVERYONE needed to be on the same "page" as far as I'm concernd. Would they of been ok with this if it was one of their loved ones? It's done now but I will not stand back and let bull dodo happen. For todays update, mom has infection at the sight. No way, huh? Why does this have to happen? After talking with Hospice and pushing that she DOES need an antibiotic finally that was taken care of. They just kept saying using antibiotics too much ones body will become use to it and it wont work later. Realalisticly, infection and ALS now or infection and ALS at a more progressed state why make them suffer any more than they already do?

My mom did open up a little the other day regarding how she feels about her having ALS. She said "why talk about it? I can't change it." I just wish she would open up to dad, if nothing else but to say I love you. Dad is hurting too but she wont talk about it because he can't change it or stop it for her.

The other day she gave me a card that had some money in it and a little note that said "thank you for all you have done and continue to do." Once again I turned to a flubbering fool, I could careless about any money but the card I will keep as long as I am alive. I am sure my dad put her up to it (just because that is how THEY are) but I know she appreciates everything. If I had one wish it would be to make this cruel ALS just stop right here for her.

I will stop boring you all with my sadness but may I say to all thank you for letting me vent. :evil:

Shelley my wife and I cried when we read your post. You are so kind to your mom and dad, this means so much. It is awful what your mom had to go through. This should not happen. My wife and I have had many emotions since the first of september when we found out I had this horrible illness. My wife says it is like you are in a tornado and it does not stop. You just keeping tossing and turning inside. You do not know what way to feel. The pain of it all is unbearable. I hold my wife and she cries one moment then she holds me and I cry. I am not a man who cries very often but I have to say the tears are there. Please know that you are not alone and we feel your pain.

Hi Shelly,
I am hoping a praying for your Mom that when she gets using the feeding tube for nutrition that she will gain more strength and feel better. I was at a down time before I started using mine, and felt much better after I got strength back. My heart aches for you and your family, but keep strong. I know it is hard, but try to keep positive. Everyone on this forum is here for you anytime you want to post.
Love and prayers,
Hi Shelly!

I can tell you that after reading your post, I am bawling my eyes out. It is good for us to cry. I am sharing your pain and that of your family, and also the pain of all the other ALS families. This is one challenge in life that we will never get over. Remember, ALS is "About Loving Someone!"

We cannot make life fair, but we can certainly do everything we can to make each other happy and more complete. What makes your mom happy? Does she like to get out of the house? Does she like to go to a movie? Does she like to see the grandchildren? You would know what she likes.

Also, never be afraid to challenge the medical staff in a polite but very direct way. They cannot oversee everything, and often mistakes are made because they are overworked. I know that for a fact. I have worked in hospitals and been a patient often myself since 1964.

As for reluctance to discuss their disease, I think that the victims to ALS also know the pain that we are suffering as well, and do not want to burden us any further. At least that is what I was told. Jack never discussed his disease, but I knew he was very hurt, angry, and frustrated. I hugged him a lot, cried with him, and kept telling him that I would look after his family and his dreams in the best way that I could.

Yes, this is very hard. It sucks. At least crying on a keyboard does not make the ink run. LOL! ...........right...........

Just know that all of our thoughts and prayers are with you, and you are never alone. My phone rates are very inexpensive, and I would be more than happy to call you and chat. Just send me your phone number to: [email protected]

Much love to everyone, Pat :(
Hi Shelly. It sure isn't a picnic here but there are a lot of strong and caring people here. Feel free to say whatever is on your mind. It does help and as Pat said the ink doesn't run.
Another thing: If your mom isn't ready for a support group there is no rule saying other family and friends can't go. There is help and understanding there for caregivers and anyone else touched by this disease. You don't have to go to every meeting but if you could go to just one you might meet some others in the same boat and you won't feel so alone. Also a couple of hours away from home and family might be a good pick me up for you. Don't forget to look after yourself too.
Take care. Al.
i read your post, andyour mom is very lucky to have you. i am a mom, and i can say you hardly ever want to "burden" your is like if you can just shelter them a little longer everythng will be ok.
as far as her feeding tube, my advice is don't rely on the doctors or n8urses to give you accurate advice. they mostly think als is not worth the time. i have a feeding tube now for 6 months...i was sent home after the procedure with a few bottles of ensure and a paper sayiong what to do. and what to look for. the first few days were very stressful. and i did take my pain meds.... oops! they shoukd have given me antibiotics also, but neglected to, as a result i had a miserable infection around the site. anyhow, that is in the past. my recommendation is find a routine, a way to feed that is most agreeable. one thing i can tell you is that everything...even the disease itself is embarassing!
after the first few days and reading the labels of the so-called nutrition they wanted me to take. i started to prepare my own foods. all of it. every day every gives me the satisfaction to know exactly what is being put into my body. a feeling of controlling things. and i have gained over 10 pounds. and have been maintaining that wieght for months now.
i blend and strain. thats it. take my veggies, beans, eggs whatever. throw it in the blender, add liquids and then strain to make sure there are no lumps or clumps. i will be happy to share my "formulas" if anyone is interested.just e-mail me [email protected].
also if you ever need a relacement tip, you can order it ahead of time, or check w/ your local medical supply to see if they keep them on hand.
i wish you luck,be patient...we, the ones afflicted generally hate to feel tthat we are imposing and interfering in others day to day stuff. we are frustrated by our very simple limitations....or at the very least reminded of the things we no longer can accomplish withoout some tender loving care.
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