Amyotrophic Lateral Sclerosis (ALS) Support Group

I was fighting on the front line my brother was living with me, bulbar is a quick progression of ALS. I had a cot put into the living room where my brother resided I took out all the living room furniture all that was there was his entertainment his movies stereo and his chair that reclined. I could not cope with the 24hour care it took so one of my family would sometimes stay overnight and take the evening shift. My brother was not a good sleeper and stayed up alot at the beginning. I found that the most help came just from those who could pitch in with the housework, getting groceries, sitting with Kraig while I showered etc.. If you ask I am sure that your step mom could use some of the above help. Being there or knowing that your family is close by is a great help, making some dinners and dropping them off...all are great to take the burn out factor from the main caregiver. You will all need each other, this disease is not for the faint of heart, it takes a lot of energy, to see a loved one go through this. Try to be gentle and offer some alternative care or read up and then maybe attend a clinic appointment. Have a family meeting and decide among yourselves just what each would be able to contribute to your dads care. Keep reading on this site lots of good advice from those who are active in their own care or from those who are caregivers. Any rate I am sorry you have to go through this and I offer my support and prayers to you and your family.

Not knowing what part of MI you're from, I will suggest www.alsa.org/michiganchapter and www.alsofmi.org both sites are full of info and have several listings for support groups in the area. The ALS Michigan chapter has 2 offices, 1 in the Grand Rapids area which serves most of northern MI and 1 in Troy which serves the lower half of the mitten. I am primary caregiver for my husband and have had people ask what they can do. Unfortunately, they were asking this early on in the disease when I really didn't need the help. Most of the time, any help offered at any time is appreciated and if you are currently employed and cannot be with the family in the day to day care of your dad they need to understand that. I know just coping with ALS is difficult at best. A year ago, my husband could walk to the bathroom by himself, now, he can barely transfer between chairs with assistance. It is an emotional strain on all involved, whether the person is there 24/7 or 1-2 times a week. Joy has some very good suggestions having been there, done that. I'm still living it and learning. The support groups are good, especially if a couple of you can go together then, the next month, a couple of the other ones go. Make sure your step-mom takes some "me" time, even if it is just to go do a little shopping or take in a movie or lock herself in a room and read, maybe even cry. The caregiver needs to remember to care for themselves. I don't know how much help this has been for you but, from a fellow Michigander to another, I'm here for you.
Brenda

I found in caring (mother/brother) that the ALS support groups from large cities have equipment and medical know-how to be of great help. My mother and brother had 24/7 care from a family member. We all got our calendars out and made it a priority to be with them. My brother was diagnosed and then passed in only 6 weeks. That was pretty quick. It is the 3 and 4 year plus where it gets harder to co-ordinate. For my mom, who had it for 16 months, we had friends come in too. Her dentist, hairdresser and occupational therapist voluntarily come to our home. It was so nice for her to have people come our home. Friends came by and read books to her...anything so she was not alone.

This is a journey with trials and victories. Let us know how we can support you.

My prayers,
Barb

Thank you for your kind thoughts and messages. Dad seems to be very stubborn at this phase of his disease and is determined to keep going despite the multiple falls and choking on food that he stops breathing. He's been in a back brace, TLSO for 2 months due to a fall off a tractor and a back compression fracture. But he stills take big risks.... that is so hard to watch. I want him to keep going, but I fear, we all fear that an accident will happen that will take him sooner... but the disease will still be there.... Has anyone struggled with this part of the disease. Dad still can walk in the house, uses a cane outside, but his balance is such that he falls, and falls and falls.... stubbornness runs in the family.. and it can be positive and negative.

LOL Kraig seemed like the king of stubbornness, in hind sight I think it is what they are loosing that makes them still try to control their own lives. Even though we may think we know what is best it is after all their lives. I struggled with this and unfortunately was not till I am in a wheel chair myself that I can come to terms with what loss does to a person. I remember struggling to put on Kraigs fav jeans time after time he had huge holes in the knees, but he loved those jeans so even though he could not stand, my sister and I would try to get them on him without sticking his foot through the holes. I miss him every day take the time if you all can to enjoy his stubborn qualities and just know that he needs to control what he can right now.

Hi, I am sorry to hear of your Dad with ALS. I just lost my Dad in May with the same thing. You know..just emotionally be there for him. Don't treat him any different and enjoy making more memories with him. I used to tease my Dad (he loved beef) I'd say.."See you have Mad Cow disease not ALS" and he'd laugh. There is nothing you can do to change the way he feels about you..so just visit as often as you can. I always wanted to just be near him. We'd do nothing but watch football together, or just visit. When he had a hard time I'd go "dadsit" but your in a different position. Once the "shock" wears off it will feel like nothing but time has been given to you. That's how I felt..nothing but a blessing to have more time.

Hi I'm sorry to hear about your dad. I just lost mine in July to ALS and it was the hardest thing to deal with. He had it for 3 years and I'm not going to lie, those 3 years were an emotional rollercoaster. I too lived far away from my dad, 8 hours by car, because I live with my mom. It was hard for me not to spend everyday with him, but I texted him or emailed him at least twice a week. You should try just talking to him like normal, I know ALS patients can hardly talk on the phone so try texting or email to make it easier for both of you. Like everyone else has said, just treat him the same. He is going to go through a lot of physical changes, but probably wants control of his emotional life and the way people treat him. He has no control over what is happening to his body, but he doesn't want to be treated differently, at least with my dad. Just cherish every moment with him & let him know you are always there for him no matter what. I'm here to talk xox Allie

My Dad was just diagnosed with ALS. He is 82. He has applied for VA benefits, but the wait is about 3 months. I just hope he can live to get some of the benefits.

I think this is the first time I have posted, but needed to read the replies today. My sister was dx'd with ALS in Nov 2007 with the bulbar type. The stubborness described in the posts is what jumped out at me. My sis is 63 years old, had to retire from being a checker at Safeway after almost 30 years in which talking too much was something she used to get in trouble for at work. The stubborness, as I see it, sometimes puts her into risky situations such as still driving (yes, the department of licensing tested her with an automatic and still approved and she needs to retest every 3 months), but I drive when we are together for sanity reasons. And, she will try to eat, but chokes - she says she still likes the taste of food. She doesn't want any help, she says, until she is ready for Hospice. She refuses help when dressing, even if it takes her 20 minutes to put her pants on. She will allow someone to help her open jars or other things, but thats about it. So, in reading some of the posts today, I step back and release her to do what she needs to do herself. I have always known her to do her own thing, in her own way, and that no one is going to change that. I wish her 6 adult children would understand that, too. But it is hard for them to come together on this disease, everyone grieves in different ways and on the own time table. Thanks for being here.

KTBUG..if your sister has bulbar onset of ALS and it started in 2007, she is doing pretty well. She should be applauded. Give her a blue ribbon from me. She has done a great work so far being independent. There will be a time when it will get harder for her and that may come before Hospice. Everyone with ALS approaches the disease in a unique way. I have tried to be respectful of those ways. You are so right....family and friends will process it differently too. My brother Larry welcomed the 24 hour care we were able to give him. My sister is a tad more "iffy" about the help. But, when I say I "WANT" to help, she gladly accepts. She basically doesn't want to be a nuisance and a bother. But, I love her so much!! I love helping. When I told her that, she smiled and we enjoy the time together.

Hope this helps, Barb