Mom with ALS

There are support groups for people with ALS and their families. My dad had it and tose support groups were helpful. I know there was one out of Froedert hospital in Milwaukee (I don't know where you are located tho) Good Luck.

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Hi M.-
So sorry for what you are going through. Illness is tough no matter what it is. We will keep you and yours in our prayers. I too am going through a life changing batter with breast cancer. We found support through caring bridge. It is free of charge. It is a website that allows you to set up a page and let family and friends know what is going on with your mom. People can send her messages through the site. It is so helpful to be able to read those messages - both for your mom and for YOU. I know that my mom reads them, and it helps her know that I have people praying and supporting me.

Check out the site at: www.caringbridge.org

Please let your mom know that she is in our prayers!

~S.

Well, unfortunately, your siblings are adults, so you can't "make them" do anything. As long as they know her prognosis, there really isn't anything you can do. You could try talking to them and asking them to visit her more often, but ultimately, it's their choice, and if you say too much you may end up with some hurt feelings.

As far as the test drug goes, that is totally up to your mom whether she wants to do it or not. A lot of that will depend on if she can get the transportation there and back to do it (planning ahead for when she isn't as mobile). Most people have very strong ideas about how they want to live their lives- especially when they know they don't have as much time as they had thought.

I know there are some good books out there- I'd check at the Christian bookstore first- they have a lot of encouraging books and music. Oftentimes, the clerk can help you find something that will work for you.

I hope you find the encouragement you need. Keep spending time with your mom, but don't neglect your family, either. That will just make things harder on you, your husband, and your kids.

I'm so sorry to hear about your Mom's diagnosis. My brother also has ALS and it's truly a horrible disease. He was diagnosed almost 2 years ago and is in a motorized wheelchair with little use of his hands and legs and very difficult time speaking. My brother lives close to my parents and other siblings, I'm 2 hours away. This has made it difficult to spend as much time with him as I wanted. I have 2 little boys, aged 5 and 2 1/2 yrs. I think about him everyday, many times during the day. I would be understanding of your siblings if they are a distance away. That said, I would give anything to turn back time to when he could speak better and have spent a lot of time with him. I miss his jokes and sarcasm, that's the hardest to 'translate'. While you can't neglect your own family, the time that you spend with your mother will be treasured when she is gone.

My family has done the Walk for ALS and held a benefit to raise money for new van, lift, and rail system in their home to make life easier for he and his family. Perhaps this is a way for your siblings to get involved in her care. It is difficult to see your loved one deteriorate in front of you and everyone deals with this differently. My sister who spends alot of time with my brother will let me know that he is wondering where i've been if it's been too long since I've been down there. I have talked with my brother about who he'll be seeing when he gets to heaven and that has helped us both alot. I know this is a short temporary suffering for him and that he'll be walking, talking and whole again when he's with the Lord. He has been reading the Bible alot and that seems to be a comfort for him.
Your Mom is going through a grieving process, grieving the life she thought she would have. It sounds like she needs some help. Has she joined an ALS support group? Or sought counseling?

My prayers are with you and your family. Please feel free to contact me as you go through this.

I was only 6 1/2 when my grandmother passed away due to ALS. I can picture exactly what your mother must be going through. I am a physical therapist and would not wish this disease on anyone! Please find support groups for you and your mother (and any other family members who are interested).
As for the time spent with your mother, I saw a beautiful quote this weekend: Those things that are done for ourself are quickly forgotten; but those things done for others live forever. (Or something to that effect) Do what you need to for your mother!! Your example will be seen by many others! Prayers to your family!

My uncle died of ALS in 1997. 2-5 years is about right. The disease comes on slowly but steadily. If you haven't already, read up on ALS so you know what to expect. It was very hard on my Aunt, taking care of him on her own. Eventually he had to be taken to a home where he could have around the clock care. He lost the use of his legs first, and everything came on pretty fast after that. He eventually had to be put on a breathing tube, and could no longer speak. Please do not try to handle caring for your mom on your own. It will take a toll on you and your family. Its too bad that your siblings are not helping you. Personally, I feel they should be ashamed of themselves. This is their mother too, and all the care she gave them while they were growing up needs to be reciprocated now when she needs them to help care for her. That being said, you will not regret the time and energy you are spending to be with her as much as you can right now. You will not have to live with regret as your siblings will once they realize its too late. You should talk to them and maybe appeal to them to see her or at least call her more often, but like someone else said, they are adults and you can't make them be something they arn't already. You have a good heart, and you will get your reward in heaven. If you can't enlist the help of your siblings, then perhaps friends? or an agency can help you out. Don't neglect your own family. You will have to try to divide your time between them. Perhaps you can get your kids and husband to help you help your mom so that its something you can do together? Its a tough road all around, and I feel for you. I lost my mother in 93 from a long illness, and everyday I wish that I had done more for her and with her while she was still alive.

I will pray for your family. ALS is a sad disease. the Muscular Dystrophy association may be able to offer you some assistance with literature. And, sadly, the funeral homes have Care notes pamphlets, that help explain things to kids.I would say if your mom wants to try fighting this, then by all means the drive each week would be worth it. As for your siblings. You can't do anything to change them. I believe in each family there is 1 child who takes up the part that you have. I am that child in my family. I came home and spent a month with my father before he died. I wouldn't have changed it for anything. Just make sure you are utiilizing the time you have with your mom. Knowning she is dying, try to help her get her things in order now. I put it out there to dad," who do you want to see, or talk to let's call them right now." I talked about death, and life with him. It is ok to "suck up" the time with your mom. It doesn't matter how much time you spend with her or away from her, it's GOING TO BE HARD on you. Do what you feel is right- but be sure not to neglect your spouse as well.

M.,

I don't really think you are doing anything wrong with wanting to spend time with her and I know how you feel. My mother has severe COPD and is on the transplant list for a double lung transplant and if she gets the transplant it will only add 5 years at the most but it will be higher quality. I spend a lot of time with my mother and bring my kids around her regularly also because I don't want them to miss any time with her that they don't have to. The only things I can suggest is as the disease progresses just explain in simple terms that grandma is sick and has a hard time doing things once in a while. This may also help the girls want to help grandma more with what she cannot do, without her knowing it. As for yourself, just remember to be realistic with yourself and prepare yourself as much as you can, it is very difficult, I know.

When it comes to your siblings I would just share with them that it would be nice if they could spend more time with mom and that you understand if they are trying to prepare themselves in their own way but maybe suggest family dinners once a week or month or something like that so that everyone gets together. Also, be sure to take a lot of pictures with your mom, these will be treasured not only by you and your siblings but also your children and neices/nephews.

Good luck and my prayers are with you and your family.