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ccraig1771

Member
Joined
Oct 5, 2015
Messages
19
Reason
CALS
Diagnosis
09/2015
Country
US
State
CA
City
Eureka
Hello, I have just joined this forum because my 64 year old mother was just diagnosed two weeks ago with ALS. She was given less than 6 months. I am sure that it is strange for some to hear that she is just being diagnosed yet be so advanced in the disease. Let me explain. My mother is extremely stubborn and I believe that she has been hiding symptoms from me and the rest of the family. A year ago she began slurring her speech and shortly after developed drop foot. (Although I have noticed a slight limp for a few years) Fast forward to a month ago she told me that she hadn't been able to eat or drink in three days because she couldn't swallow. After a long hospital stay and many, many negative tests her neurologists tells us the bad news. She has lived with me a month now. In that month she was hospitalized again and a Peg Tube done. She eats almost exclusively through the tube. She chokes on mostly everything else. She is completely paralyzed in her left leg, however can still walk with a walker, but it is painful to watch. She has most of the use of her arms. I really don't know if I should be giving this much information but I am scared and don't know what to do. Hospice has already been called per suggestion from her doctor. It is so difficult watching her decline so fast. She has always been so strong. I just don't know what to do. :(
 
What a shock to find out so late in the disease. It is hard to hear at the beginning stages and I cannot imagine how hard this is for you finding out so late. If hospice is already going to be involved than you need to concentrate on being with your mother and being by her side is most likely what she wants and needs from you now. I am sure she is still very strong at least in spirit and chose to hide her symptoms because she did not want to burden anyone. There is no doubt that this will not be easy for either of you but you have taken the first step by moving her into your home. She is very lucky to have such a wonderful and caring child. Call the ALS Association in your area. They can come out and visit. They will be able to lead you in the right direction with whatever is needed. Hopefully you can get her to clinic. You can always come here for support.
There are so many kind and knowledgeable people here. My husband was just diagnosed in July so my knowledge is limited and I come to this forum daily for support and advice. My thoughts are with you and listen to your heart as it will lead you. Please also listen to your mothers wishes. I must admit sometimes I need to remember to think about how my husband feels about his treatment and choices.
 
Ccraig, even though they recommended hospice, ALS is not a typical disease and hospice can be called in at any time. (In other diseases, it is 6 months or less to live.). No predicting with ALS. If the tube helps keep her weight stable, and her breathing is okay, she may have a longer expectancy. We all understand the shock of it all, and the pain of watching your loved one decline. Just hang in and be prepared for whatever comes next. If you haven't contacted the ALS assn . In your area, do. They can be invaluable in getting necessary equipment and providing support. Sorry you have to to be here. Hugs and strength to you. Donna
 
Very sorry to hear about your mother, and such a distressing situation for you. What concerns me is that your mother is walking with a walker with a paralyzed leg. If she falls, this could be serious. I highly recommend an Occupational Therapist to help you with preventative strategies. My OT is invaluable in assessing the home situation, making suggestions, organizing equipment, etc. I couldn't manage without her. A power wheelchair would be a tremendous help. I can't overestimate the value of mine. (My left leg is paralyzed too.) I know you must be overwhelmed right now. As has been said already, contact the ALS Society in your area. They will guide and help you.
- Charlene
 
Thank you all for your kind words. I will take your advice and call the ALS association in my area. Also about the falling and the walker, I am concerned about that myself. But she is so stubborn and fiercely independent that when I ask to push her in her wheelchair she gets upset. I will speak with the nurse and see if I can get OT going. This is a nightmare.
 
Craig sorry to welcome you here, but you are in the right place to find support for caring for your mom. She sounds like she shares many of my own mom's personality traits. The other caregivers here have really helped me come to terms with allowing her to make choices in her care- sound or not since it is the only power she has in this situation. You will always be able to find good information and support here at every step.
 
So sorry to welcome you Craig.

It is a nightmare, you can admit that here openly and we will all agree.

What is her breathing like? That's really the thing of course. People can live with paralysis and nutrition through a peg for a long time. With ALS the 2 main issues revolve around the breathing. Firstly aspirating some food or fluids causing pneumonia. Secondly the decline in breathing as the nerves die and the muscles can't work.

Falling is a serious issue. My Chris had 2 falls resulting in serious injury as he also refused to be told he was unsafe. All you can do is your best. ALS takes so much away that some PALS will make poor decisions simply to be able to have the control of making some decisions. For me one of the biggest things was learning to step back and just let him make what I considered poor decisions.
 
we are now in hospice and they are a big help. I do strongly recommend that you make sure you have all the equipment you need that hospice will not provide before you go into hospice. Power wheelchair or at least a wheel chair that you can adjust all her leg, neck, back, tilt and recline positions. She will need that.
 
Again thank you all so much for your kindness and support. I have never used a forum before so please bare with me. Someone asked a question about my mothers breathing. It is affected. The doctor wants her on a bipap machine to make it easier to breath. Yesterday I noticed that her right arm (her right side hasn't been affected before) started to freeze up. I know that she is afraid and I am there for her, as is the rest of my family. My adult daughter stays with her while I work and my husband is wonderful with helping me around the house. This is so much to take in and so quickly. A year ago we were going to yard sales and having fun. Strange how life can change. Now she doesn't even want to leave the house because she is so tired. She sits on the couch and watches TV :( She was so active before. I know that this has to be beyond difficult for her.
 
Your mother is blessed to have you and your whole family there for her. In all of the sadness and horror of this disease, your presence must be so reassuring for her. It is beyond difficult for not only her, but for you and your family. What you are giving to your mom in love and support is the greatest gift you can give her. I totally understand what a shock it is when you think that a year ago you were having fun at yard sales. Sudden changes in life seem overwhelming, but if you try to take things one at a time, and not worry too much about the future, things are manageable. My heart goes out to you, your mom and your family.
Charlene
 
Thank you so much anderkling. : )
 
Everyone is right, CC; don't take this 6 mo. thing literally at all. Get the BiPAP, start the power wheelchair order with your clinic (in addition to other advantages, she would prefer a chair that she is actually physically able to drive herself, as opposed to your pushing her), start thinking about a Hoyer lift, and who knows? It's years after that for most PALS.

The fatigue may get better since I'd imagine she's been overexerting herself, or it may not. She has to make her own mental adjustments, just as you are. Figuring out what interests she may still be able to pursue is key. She may not be saying so, but I'm sure she appreciates the home you have extended to her.

Best,
Laurie
 
Thank you again. I read her your posts and it is making her feel better. She so wants to be here as long as she can, and we want that as well. The shock is starting to wear off for me, but I am not so sure for her. I really like this forum and find it helpful. I will be here often.
 
Somebody correct me if I am wrong but moderate exercises actually help. Maybe try to convince her to go outside trying some activities even just sitting in the wheelchair like shopping and she can pick items for you or something but I think moving and doing moderate exercises actually help.

So sorry that you have to deal with this terrible disease! :(
 
Somebody correct me if I am wrong but moderate exercises actually help.

That is an incorrect statement in regards to ALS.

ALS is not helped by any exercise. There is shown, in some cases, to be modestly lengthened life expectancy by taking Rilutek throughout the disease.

Range of Motion "exercises" help reduce the pain of joint stiffness.

But there is no exercise that helps motor neurons reconnect.


I ask politely that persons who have no verified experience with ALS please contain their posts within their own thread in the "Do I Have ALS" subforum.
 
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