What do you do..

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Dec 26, 2006
Loved one DX
What do you do for help while one spouse is working during the day? My brother will eventually need help at home while his wife works - what do you do to work around this? What did you find helps? Who did you contact? Expense?


My wonderful brother has ALS to. I know how difficult it is.
I will be thinking of you and him and your family.

ELLIE ,seach mnd. als assoc. united hospice .hospice get any govt help start with ssi or diability. go to the state there many things ou t there dig for it don't be afraid to ask mostly get his dr to write letter to whom it may concern blessing janf
Hi Ellie

Hi Ellie, My son-in-law Jack has ALS. I read your post and knew exactly how you feel. My daughter (Jack's wife) who is 35 was recently diagnosed with Advanced Breast Cancer. This past year the ALS Assoc. made arrangements for an Aide to come every day for 3 hours in am. She takes care of his shower and breakfast and twirls her hair the rest of the time! Well, my other daughter took some time off from work so she would go there or I would and then Jack's cousin has been available too. Now my other daughter went back to work in September, Steph is home till at least January but can't lift and is suppose to get her rest. Well, you know how that is ., I'm sure. So we have an Aide for 3 hours ,Jack's cousin and myself. My other daughter does the weekends bedtime. We are looking for more help too. It's just an unbelievable situation. It's hard to put into writing all I want to say,Ihaven't posted much recently but do read the posts. Try the ALS Assoc. in your area also The MD Assoc. and I know certain areas have Volunteer programs where people are trained and background checks are done too. I'll let you know if I find anything else. My Best to you, Beebe
Some states have funding where you can hire your own personal care attendants. Massachusetts and California are two, and there must be others. And some folks have luck with college students, who don't charge as much since they don't yet have their degrees.

If you must hire help, look for ways to cut costs elsewhere. And try to dig around for anything else you are eligible for. For example, my state has a rehabilitation agency which gives up to $50,000 in low-interest loans for remodeling. good luck and let us know how it goes! Cindy
I don't know how much help this will be or how widespread it is, but my sister told me about Extra Hands for ALS. Here is the website:


A co-worker got in a very serious accident which resulted in brain damage. Somehow the insurance paid her daughter to be a caretaker. I wish I had more information but that may be something to check into. Peg
It really depends on where you are as to the expense. Where I live, you could count on $15 to $20 an hour for hired help. Yes, it's expensive...

We also have a "Senior Day Care" type facility in town. You might look at this option. If you need vent management, I don't know if that type of place could help. It's mainly for people with Alzheimer's and dementia, so I don't know how your brother would even feel about being in that type of environment.

Other options: definitely look into volunteer possibilities. MDA and ALS organizations can help. Some churches have volunteers who do stuff like that. A lot of it will depend on the type of help that you need. Also, find a case manager who can help you. That person will know your area really well and might know of resources that are unique around there. You could get a case manager through the MDA, or if there isn't a branch near you, look to see if there are any private case managers around there. You would have to pay a private case manager, and I have no idea how much that costs. It would probably save you money in the long run, though.

And don't forget about family and friends, although I must mention that you will definitely find out who your true friends are. You might have people who constantly say "Let me know how I can help," and then when you respond, "Well, we could really use some help on Mondays from 10 a.m. to noon" (knowing that the "friend" is normally at home during that time), you might hear every excuse imaginable. But there will always be friends who are really willing to help. I'm on the verge of telling a relative "Well, if you won't help out personally, could you please send us $100 a week for the time that you refuse to be here?" But I won't...
Brother needing help

Hi Ellie,

A couple of people that helped my dad after his diagnosed. He was on Medicare, they helped with everything. His regular dr. ordered, a bed that raised much like a hospital bed, physical therapy and speech, they came to his house. Also, through Medicare he had a woman come in 3x's a week during the week not on weekends, that showered him, since I was the only child my dad did not want me doing that for him. Someone was always at his house, most everyday the way the therapy worked out. Not all day but for at least a couple of hours. That helped me knowing those that were qualified could call and tell me if they noticed something different.

I had an aunt that lived close to him and if I wasn't there she was. That helped. I would suggest if at all possible, you could set up times if he has children to go over and sit with him, if he is a member of a church asking those that don't work during the day to come and visit, sometimes it can be a church in the area that would be willing to help regardless of him being a member or not. At least they should....

Lastly, when he gave up trying to live on his on, I moved him in with me, which is what I wanted to do from the beginning. I have to teens that helped me with him at night when they could. It was nice having Papa in the house and good for them to see how to care for someone they loved. At that point his dr. ordered Hospice to come to my house, once that was done all the other therapy stopped and they sent a lady that came 3x's a week again to shower him, and his nurse came twice a week or more if I needed her too. I have read some unfortunate things about others experience with Hospice, I can say they all are not the same. We had a wonderful nurse. My friends that did not know my dad personally, came and brought meals for our family just because they knew it was a trying time. That helped not having to fix food all the time for the family. I tried to make him as comfy as I could, providing him with what ever he wanted. I just felt that was the least I could do.

Once I could no longer move him and care for him the way he needed I moved him to the hospice residence. There he had 24/7 care and I saw him everyday, without the stress of being the caregiver/daughter. My visits with him were that of a daughter. It allowed me to stay with him most of the day knowing medical care was just around the corner. He was there about little over a month before passing. There was not a time when I didn't know how he was, they were very good about that, giving me a report when I walked in or calling.

I had contacted our local ALS chapter and you would think they would have all the answers to what we needed. I will say that was a joke. I will never recommend them for a dog. The reason I say his dr. "ordered" was simply she had to write a prescription to Medicare and Hospice for them to cover the expense.

I can say with all the people coming in and out, there was still never enough. Caring for a person with ALS takes a small army to say the least. I am not saying not to check with your local chapter, yours may be better than mine, as my Hospice was wonderful compared to others. If he is a veteran, check with the VA or also your local MDA chapter.

I hope that helped some, I know we can't give all the answers, I just found that taking one day at a time was best, because when I tried to look into the future about stuff and his care, I just exhausted myself and all around me. I will pray for your strength and his, and that you will make the right choices.

There is a great little book out there, I think It is by Zig Ziglar titled "How to get what you want." He advises family members to do just that: state that you know they want to help and ask how much time they can contribute. When the excuses come in, say you know they have a very full schedule and ti would be Ok if they contribute towards hiring help. You might not get $100 a week from them but I learned the hard way it does no good to anybody to let them off the hook. I did this with my siblings and now we all regret it. JMO. Cindy
Beebee - could I ask about how much the aide was from the ALS foudation?
Thank you Chantily. My brother isn't to the point of needing care at home but I am trying to be proactive. Your information was helpful. Also, we decided this weekend that instead of weekends with us he will come for at least a week at a time. This will give his wife a break and a week with a relaxed life. He doesn't require care yet but simply help with tasks. I live 2hr from him but I will be utilizing resources in our town for his visits when we get the point of him needing shower help and whatnot while I am at work - thankfully only parttime.

I would PM you but you are new here and that capability isn't available for new members.

Can you expound on the Georgia ALS Assoc? We live in Monroe. What has bveen your experience if you don't mind telling us?
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