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  • Starting your own threads can be helpful for getting info/advice/support, about your individual situation. You can find answers to almost anything regarding ALS here. Go to the main page (ALS/MND Support Group Forums), choose one you'd like to start a thread on i.e. Current Caregivers (CALS). Click on that forum heading. Above the list on that page, upper left, is a "New Thread" button. Click on it. A window will appear. Choose a title, then use the space to explain your situation, ask for advice, etc... You are fortunate to have friends that you can talk to when you need to vent, but will most likely need more help as your husband progresses. I understand how you feel about caring for your husband by yourself, but it can become extremely difficult. Try to be a step ahead of the changes that will be coming, so they don't sneak up on you and become overwhelming. Feel free to contact me if you have more questions.
    We have come a long way, probably cause we have already been through so many stages of grieving already..
    Yes I do most of the same things you do for your husband, I know how tiring it is girl. I think I am going to try and see if I can go to the gym a couple of times a week.I seriously am getting burned out. I am always here. If you ever have time to talk I can send you my #.one day at a time is all we can do.
    We are working through it with my son. He will be fine. If I can inspire you to hang on, do the best you can and don't beat yourself up when times get hard, then I will be your inspiration. I encourage you to post on the Caregivers forum. You must post a certain amount before you are able to private message. Of course, don't do it all in one day! That won't work. These messages on your profile page are not private.
    Marilyn, my husband passed in January, but I never had help. Well, my dad would come and do what he could, as far as stuff around the house that needed to be fixed. I never asked him to, he just offered and showed up. We have a son that helped me cut the grass, but he is only 11. As far as personal care for my husband, we had none except when my SIL took him for a while shortly before he passed. I never had any people to help with the house. Sorry this is all over the place. I wish you luck...
    You have a lot on your plate... if you have the insurance that covers it, you may be able to get someone to come in a couple of days a week to help you and him out. I'm not taking care of anyone else but my kids.... I'm the PALS, but still working (self employed). It takes a while to learn how to maneuver around here, I'm still learning stuff! When you want a lighter moment, find the Come for Tea thread and join us at a virtual tea party!
    Marilyn, definitely don't try to be a hero... line up the help before you think you'll need it, and it will be there when necessary. That goes for equipment, caregivers, etc. Does your hubby go to an ALS Clinic? If not, you should have him seen there. Good luck, and if you have any questions, just ask away!
    I saw your post asking if you should be proactive about getting some help. I responded there, but thought you would see it better here. I recommend that you start your own thread in the Current Caregivers section. You will be able to explain your situation, and receive more advice and support. It sounds like you really need some help at this point. I'm sorry you and your husband are going through this...it is so hard.
    I know it is tuff, no sleep,rest and your immune sytem down, now I am sick.. Yuck. One day it will have to be better for us, but we know it is going to get worse unfortunately. Hang in there..you are not alone.
    Hey Marilyn, sorry about your husband too. It is Very hard working full time, and being a caregiver too..Do you have help with your husband? I really don't..just me trying to see about evrything. Most of the time I am just pooped..Bruce has bulbar, no speech, Bipap, cough assist, suction machine , and neubalizer so far. We thought he had pneumonia, but than God it is Bronchitus. I am sure Bruce has dementia too, his mind is definately not the same. I have learnt to take one day at a time, if I looked to far ahead, I would drive myself crazy. How do you deal? Children?
    Thank you for your note Marilyn. No one but first hand people can really understand ALS and even we are at al lose to explain it. Thank you and keep your head up. As my late Daddy said This too shall pass.
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