scared

[justb]

I wish someone could tell me what's happening. My mom was diagnosed the first week of July but started having noticeable symptoms mid January 07. She suspects she had more mild symptoms (muscle weakness, fatique, etc) a couple years ago. In January she fell and couldn't get up without help. By mid April she was using a walker to get anywhere. By the end of May she was primarily using a wheelchair and only using the walker for very short distances. When she went out of town to see a neuromuscular specialist (the doctor who ultimately diagnosed her) she was still using the walker somewhat. When she came back a week later she was unable to take any steps because both her feet are limp and won't move and have a blueish tint to them. She had heart problems before any of this ever started as well.

The specialist who diagnosed her, based on EMG and muscle biopsy, said the disease is progressing very rapidly and told her to come home and get her affairs in order. Since coming home (July 8th) she has lost all ability to use either leg, her voice is almost entirely gone, is having significant swallowing problems and she is drooling and choking on mucus. We are taking her to an ALS clinic out of town this weekend (Aug 3rd) unless she decides she doesn't want to make the trip. It's about a 5 hour drive from where we live...and the closest possible place for us to go.

She is having a very hard time breathing and says it feels like her throat and chest is "contracting" or having spasms or something. Her face twitches non stop and her arms and legs look like there is something squirming just under the skin all the time. Me and my dad are her caregivers, when he is working I stay with her and when he is off work he takes over for a couple days. She has home health care services and they have been great but she is too scared to let them do much of anything. She told me today she is ready to die, and doesn't want to live this way anymore. I try to imagine how horrible this is for her but at the same time it has all happened way too fast and I am terrified. What is happening? Is my mom already dying?

please someone reply to this

 

[JACKIEMAX]

Ans. To 'scared'

Sweetheart, I Wish I Could Say All Will Be All Right, But I Cannot Say That. It Does Sound Like Advanced Als To Me, And Maybe To All Who Read This. Als Is A Monster Disease, And Everyone On This Forum Can Feel For You And Truly
Understand What You Are Going Through.

My Husband Has Als And I Am His Caregiver So I Know What You Are Saying.
I Can't Hug You, But I Will Pray For You And Your Family.

Please, Other Members, Help This Child Out And Send Her Hugs Too.

Jackiemax

 

[Al]

Hi justb. I wish there was something good that I could tell you. Having an aunt pass away from ALS and now your mom's decline seems so rapid is particularly devastating. There is not really much that can be done but possibly the ALS Clinic will be able to at least help manage her symptoms better. My heart goes out to you and your father. If you need to ask any questions or need to vent or have a shoulder to cry on we are here.
AL.

 

[midwestgirl]

I am so sorry to hear what is happening to your mother - it is a horrible disease and your mother's seems to be progressing extremely fast. There are things that can be done for your mother's symptoms to make her more comfortable. Medications to help the excess saliva (drooling) and muscle spasms. Does your mother has a wheelchair? The ALS clinic may be able to help you get one, also a communication device might help your mom. For swallowing issues, first make sure she is on a soft diet, and drinks thickened liquids, takes small bites and tucks her chin to prevent food going "down the wrong pipe". Your mom may want to consider a feeding tube to prevent aspiration. It is a very simple procedure, and helps not only with eating, but also makes it easier to take medications.

This is all so overwhelming for your mother, you, and your father. Maybe if she can get help with some of her symptoms, she will feel better. Since your mother is progressing so fast, I would recommend contacting Hospice - they will be able to keep your mother comfortable.

My prayers will be with you and your family!

 

[hboyajian]

Dear justb, Being your mother's caregiver must be both heartbreaking and exhausting, but it gives you this precious time to love her and hold her or just be with her, as I am sure she did with you. Breathing issues are critical with ALS, and it is likely that you will be able to get some help with this at the ALS clinic to help your mother stay more comfortable and less panicked about it. If you need help sooner than next week, which could happen, take her to her closer doctor. Has anyone mentioned a Bi-pap machine for breathing assistance? If your mother wishes to use this kind of assistance to breathe more effectively and potentially extend her life, this is an important option to explore.

Yes, it has happened so fast you and your dad have hardly had time to breathe yourselves. I wish I could say different, but as you know this illness takes your life, though for each person it progresses in its own way and in its own time. Has your dad spoken frankly with your mom about what, if any life extending procedures she may want (feeding tube and ventilator) or not want. These are huge decisions, and hard to contemplate much less talk about, and might need to happen soon. Hospice, as another person has mentioned, is a great resource and can provide help to you and your mom should she wish no intervention, but comfort and support.

You are doing the best thing possible, spending time with your mother and caring for her, but you need support and a shoulder to cry on too. Your mom, though she cannot move much, is able to love you right back, and could be just the person to allow into your heart to know of your grief and comfort you. She is still your mom. Also, is there anyone in your aunt's family who you can talk to and can help you out? They have been through this and know what you are up against. I feel for you and am thinking of you tonight. Sincerely, Holly

 

[trustinggod]

I am sorry for all that you have had to face and deal with so far -- and for all that is still to come.

Based on my experiences with ALS I am sorry to say that it does sound like the end stages unless your mom decides to have a feeding tube and wants to have a trach and respirator.

I'd suggest you get in touch with a hospice organization in your area as soon as possible. They will not only provide "comfort" medication to make sure that your mom does not have to suffer they will also help you understand what is happening now and help to prepare you for what will happen in the future. Their services provide for a spiritual support person to come and visit as well as many other medical support personnel as needed.

Any finally, as the time of death approaches (yes they can usually tell) they will, if you want them to, stay and help to ease any fear or pain and take care of the necessary paperwork and telephone calls.

I know this is all happening way to fast and I am so sorry for you and your family.
Try the best you can to take it one day at a time and spend whatever time you have left
making sure that your mom knows you love her and that you will be okay. It's important for the one preparing to die to know that the family will be okay once they are gone. Give her permission to go when she is ready.

I will keep you and your family in my prayers.

Jeanne

 

[Icanmanz]

I wish someone could tell me what's happening. My mom was diagnosed the first week of July but started having noticeable symptoms mid January 07. She suspects she had more mild symptoms (muscle weakness, fatique, etc) a couple years ago. In January she fell and couldn't get up without help. By mid April she was using a walker to get anywhere. By the end of May she was primarily using a wheelchair and only using the walker for very short distances. When she went out of town to see a neuromuscular specialist (the doctor who ultimately diagnosed her) she was still using the walker somewhat. When she came back a week later she was unable to take any steps because both her feet are limp and won't move and have a blueish tint to them. She had heart problems before any of this ever started as well.

The specialist who diagnosed her, based on EMG and muscle biopsy, said the disease is progressing very rapidly and told her to come home and get her affairs in order. Since coming home (July 8th) she has lost all ability to use either leg, her voice is almost entirely gone, is having significant swallowing problems and she is drooling and choking on mucus. We are taking her to an ALS clinic out of town this weekend (Aug 3rd) unless she decides she doesn't want to make the trip. It's about a 5 hour drive from where we live...and the closest possible place for us to go.

She is having a very hard time breathing and says it feels like her throat and chest is "contracting" or having spasms or something. Her face twitches non stop and her arms and legs look like there is something squirming just under the skin all the time. Me and my dad are her caregivers, when he is working I stay with her and when he is off work he takes over for a couple days. She has home health care services and they have been great but she is too scared to let them do much of anything. She told me today she is ready to die, and doesn't want to live this way anymore. I try to imagine how horrible this is for her but at the same time it has all happened way too fast and I am terrified. What is happening? Is my mom already dying?

please someone reply to this

justb--hi, sweetie! I just read your post, and it tore me up. Hmmmmmh! I am exhausted, because I had a very busy day today, but I think I read that your mom just went to the specialist, here recently, and according to what you said she said her symptoms started about 2 years ago, is that right? It sounds like her als is too advanced. What about her swallowing? Is she having problems with that? You want to know if your mom is dying, I really don't know what to tell you, but it does not sound too good. When my son's als was at its final stage, that is exactly what he was doing, just what your mom is doing. It is heartbreaking, I feel for you, sweetie. Let me tell you something else, when these als folks make up their minds not to keep on going, they will do exactly what they wish. If they decide to quit eating, or taking nourishment via the peg, they'll do just that. There is no way in the world that you can talk them into going by the book, so they'll last longer. If they wish to die, they'll do just that. I am so sorry I have to put it like this,, I was told about this by Hospice experts. These people, they don't want to go on living like this, they are ready to go home (heaven), and rest. Als is such a horrible disease, it breaks your heart. I know, because it broke mine. May God bless you, sweetheart. I wish I could give you some sort of hope, but I can't, I'd be lying, and I would hate to do that, just get prepared for the worst, and show your mom how much you love her. Hold her, talk to her, I know it's hard, because these folks, when they leave this world, they go in silence, becaust they cannot talk. It happened to my son. I will quit for now, because I am beginning to feel bad. God bless!

xoxoxo,
Irma

 

[CindyM]

Hi Justb. I am so sorry this is happening to you and your family. Are you and only child? Hopefully you have some siblings, other family, or close friends to help during this difficult time. The advice you have been given comes from people who have already wlaked in your shoes. I hope Mom is able to get to the ALS clinic as they maybe can help with osme of her symptoms. And it is not too early for hospice. They are free and will come to your home for both you and your Mom and Dad. Pleaes keep in touch! Regards, Cindy

 

[justb]

Thank you

Thank you all for your replies. Mom continues to have new challenges daily. From everything I've read this disease is "supposed" to progress slowly and yet my mom seems to have something new, or worsened, every day. I'm beyond exhausted and yet I instinctively tell everyone I'm fine if/when they ask, which really isn't often. All I can do is hope I'm doing everything the way I should.

I'm the middle child of three. My other siblings call and check on mom daily, but can't be here because of distance and/or work obligations. I wasn't working when all this started and obviously won't be now, which is very ok with me. There's a whole story here about this part that I am too tired to share just now but it's interesting all the same.

I'm very bitter and hurt when it comes to God and church. I shouldn't be, and wasn't raised this way, but there it is. And I hate myself for being angry with God but I am.
Of all people on this Earth my mother did not deserve this. I'm sorry but that's how I really feel and there's no where else to just blurt it out.

 

[Icanmanz]

Thank you all for your replies. Mom continues to have new challenges daily. From everything I've read this disease is "supposed" to progress slowly and yet my mom seems to have something new, or worsened, every day. I'm beyond exhausted and yet I instinctively tell everyone I'm fine if/when they ask, which really isn't often. All I can do is hope I'm doing everything the way I should.

I'm the middle child of three. My other siblings call and check on mom daily, but can't be here because of distance and/or work obligations. I wasn't working when all this started and obviously won't be now, which is very ok with me. There's a whole story here about this part that I am too tired to share just now but it's interesting all the same.

I'm very bitter and hurt when it comes to God and church. I shouldn't be, and wasn't raised this way, but there it is. And I hate myself for being angry with God but I am.
Of all people on this Earth my mother did not deserve this. I'm sorry but that's how I really feel and there's no where else to just blurt it out.

Hi, justb! Just read your post, and I am so sorry that all of this is happening to your family. May God bless your mom, and the rest of the family. I know that what you are going through is really hard. I've been there, sweetheart. When my son became ill, I felt really bad. The first few months were torture. I experienced a lot of pain, but do not remember being angry at anyone. From the very beginning, my son had a long talk with me. He told me, "Mom please don't blame God, and do not be angry at Him." "I am okay with what is happening,. Plase accept it as one of His plans." My heart ached so for my son, and it still does. It will be 2 mos. on August 3rd since he passed. I still talk to him as if he were here. What I mean by this, is that when I pray, I pray, and talk to him at the same time. I pray, I talk, and cry at the same time. I have always known that it is okay to cry. If I wake up in the middle of the night, I sit up on the bed, turn to one of his pictures, and start praying, talking and crying all over again. I'm gonna be doing this till the die I leave this world!
You take care of yourself, and your mom. Try praying, do it in front of your mom, hold her while you do so, believe me it will make you feel a little better.
God bless you all!

xoxoxo,
Irma

 

[CindyM]

Of all people on this Earth my mother did not deserve this. I'm sorry but that's how I really feel and there's no where else to just blurt it out.

Justb, this is the exact place to say what is on your mind. Please feel free to visit anytime and share what is happening. And remember you will feel worse if you are farther away from your Mom and siblings right now. It is a helpless feeling to watch from a distance.

You are right that your Mom does not deserve this. Neither do you, I might add. I hate it that sometimes bad things happen to good people. Please take care and try to do something nice for yourself today. Cordially, Cindy

 

[caroliney]

Encourage your Mom, as every day new research trials are on the horizon. My husband is 20 months into this complex disease of MND/ALS. The ALS clinic will give her moral support as well as health needs assistance, which is vital right now for her. She needs your love and encouragement. Where there is life, there is hope.
Your love and support will bring her through the will to live. Be strong for her, and you are in our prayers and thoughts. As a CALS, I can relate to what you are experiencing and it is very hard on both the patient and the caregiver.
So sorry you and your Mom are experienceing this complex challenge of ALS.

 

[janf]

Hi I Have Als I'm A Mom My Daughter Helps Me Also. Hug Your Mom Say All You Can Say To Her And Let The Clinic Advise You And Councel With You.... Have Hospice Keep Her Comfortable. Ask God For Help And To Give You Peace . God Blessyou And Your Family. We Are Here For You. Janf

 

[anne]

Hi Justb... I am sorry for what you are going through. You are not alone. My mother has bublar Als and has taken a turn for the worse. Her breathing is terrible. I too have the same feelings as you do. My nerves are getting shot. Hang in. Take one day at a time Take care. Anne

 

[blessings]

How can I emotionally support a family member who has been recently diognosed? I desperately want to be able to do something, but family is unable to communicate with each other.
Heartbroken