My brother in law has Lou Gehrigs and it started with his throat his speach has been gone for many months. we were relieved when he started using a white board, at least he could comunicate with us now he's getting so much worse my sister and i have been with him up to emergency about 4 times in the last week .he's been on a feeding tube for about 2 month's now, we live in Kalamazoo Mich going to both Borgess and Bronson Hospital , he's on cumaden to thin out his blood and now the feeding tube is bleeding out of the stomach like water. so back to emergency again overnight . they reduced the mg of cumaden from 10 mg to 5 mg per day . he's back home now and so constipated he's up all night stumbling around , my sister won't leave his side ,she hasn't slept in many days every time she falls asleep he wakes her up all mad at her for sleeping , she's probably going to die from exaustion be for he does , he figures if he can't sleep why should she, we were in the hospital when they offered him a nurse to come by the house to do the blood work and help out, but he refused saying it on his white board that was 3 days ago my sister probably hasn't slept 2 hours sence he refused to let a nurse come over, we know he's going down hill faster and faster , are his symptoms last stage or could this go on for months? we had talked about if we should pack him up and go to U OF M Michigan the doctors in kalamazoo don't know what to do, or is this to small of a town for them to know how to deal with this disease, please any advice would be greatly appreciated . GOD BLESS and thank you
Dear twincam my heart goes out to you I know all to well what your sister is feeling my Grandmother father oldest brother and two uncles all dies of ALS the trearment for AlS hasent changed muched all these years it's a robber of life it's so hard on them they still have full use of thier mind but are lock in body that is failing them the best thing we could ever do was love and support them but to do that we had to take care or ourself we needed out side help please tell your sister not to try it all by herself He might not see it but it's the best thing for him and her God Bless
Your brother seems to be afraid, frustrated, and is transferring his feelings into being inflexible and demanding. You need to take better charge of the situation. He obviously isn't thinking clearly. First, if caregivers don't take care of themselves, they often do die before the person with the disease. You need to build a program of care using all available resources, both family/friends unpaid people and professionals/paid folks (such as the nurse). Don't give him the option of accepting or denying the additional help. He WILL allow the additional help, or his alternative is a care facility, such as an adult care home or nursing home. There are state Medicaid resources out there. You need to call your local human services office and find out what services are available in your state. You need to set boundaries for him. Develop a plan of care with him with time frames that things will be accomplished throughout the day. If he isn't sleeping, talk to his doctor about medications that will help him with his anxiety and sleep. There are many web sites that have information, including the MDS/ALS web site. Help him gather information on his disease so he has a better understanding and can make more informed decisions. Contacting specialists on ALS at the U of Michigan is a good idea. Even one appointment to counsel with a physician would be good and then you may not need to move. Gathering all family members and/or friends and dividing the work & care into smaller, more manageable tasks for all it a good way to approach it. There is more I could suggest, but this could get you started. SET BOUNDARIES for him. You are beginning to resent him, from the sounds of it, and that just makes you feel guilty and doesn't help him or you. The disease is controlling all of you. Take back some of that control. Tell him what behavior will not be allowed. He, too, has some responsibility in the situation and he needs to own it. I am a Social Worker and I, too, have ALS, so I know what you are going through. One last thing. Generally, there are caregiver training classes for people who provide caregiving services to others through agencies. You can call your nearest Senior Information and Assistance office or human services office and they can help you locate them. Consider you and your sister taking a class in caregiving. Give yourself some useful tools. Also, talk to them about formal caregiving services in your area for in-home personal care through Medicaid. There are federal programs that fund states for those services. In Washington state it is called COPES. It is likely your state has the same type of program. Good luck.