I'm so scared

[trustinggod]

Irma, Thank you for your kind words of affirmation. Yes, I have read your posts and because of your willingness to share so freely I feel as if I know you. My heart aches for you when I read the loving tributes you write to and about your beloved son Rudy.
I understand the need to share about the experience of being a CALS and experiencing the power of God's peace and provision and the very real truth about His faithfullness in even our darkest hour.

Your son was blessed to have you there for him and I am certain that you made his life with ALS more bearable and gave him so much comfort. I imagine it's the very worst kind of loss a person could experience (losing ones child) but I can't help thinking that
it somehow is also wonderful for the child (including the adult child) to have their mother
with them loving and comforting them until the end. What a wonderful gift you gave to your son. Many could not do what you did. My husband could not be there for his fathers death (he purposely delayed his arrival to miss his passing) and I've know others who have chosen to put their loved ones in hospitals or nursing homes because they just could not handle the emotional distress and physical challenges of caring for terminally ill loved ones. I guess we all have different strengths and gifts and I don't mean to suggest that one way is better than another. All I know is that I am a changed person because of my experience with ALS and if I had to guess I'd say you are too.

Take good care of yourself Irma, you're one of the good ones.
Jeanne

 

[CindyM]

I love to read and see the support that members offer each other here. Being a CAL or a PAL is the most difficult job in the world and I am continually amazed at what I see here on these forums. Cindy

 

[Icanmanz]

trusting, thank you for such a nice post. This site is amazing. I have noticed the new members, the ones that are close to departing (I am following them pretty close), and the departures. My heart aches every time one of our Pals pass, I feel bad for their loved ones, and on the other hand we know they will be at rest. God bless them all.

Irma

 

[ScottishKiwi]

Hi Jeanne,
Thank you so much for your reply of wonderful words. Since my last post, my husband has suffered a lung infection and has gone thru'a very stressful week. I've cried buckets watching him struggle with breathing and coughing, but he is slowly improving with his medication and antibiotics. He is now on morphine each night to keep him comfortable and sometimes thru' the day if he gets aggitated with coughing. He seems quite alert - usually in the afternoons and evenings and happily watches TV.
Our regional MND field officer is visiting us this week and she thinks he doesn't have too long now. Time maybe to call our son home from abroad - I'll see what she thinks.
Thanks to all for a wonderful support network.
Ang

 

[CindyM]

Be sure to let us know what the MD folks thing, Scottish. I hope you son arrives in time. Blessings, Cindy

 

[trustinggod]

Dear Ang,

You are and will continue to be in my heart and prayers.

I hope your son will be able to be with you when the time comes for your sweet husband to leave this terrible suffering and go "home".

Take care and never forget that you have many "friends" here when you need a ear.

Warmly, Jeanne

 

[DonnaJ]

Hi Robin

I'm new to the ALS forum and your note caught my eye because I also care for my husband fulltime. My husband Bart chokes and drools alot. He does well with mashed potatoe's, gravy, mashed green beans, applebutter, and i mash all his meats up real fine and cover with gravy of his choice. He still chokes, but not quite as bad and the mashed potatoe's helps keep the weight on.

It is a scary time for you and him. Call Hospice and if for anything else they will be support for you.

I have done this for eight years now and of all the notes i have read on here tonight you all have lived or are living what we are. Please know that even though I know none of you that my heart goes out to you all. May God wrap us in his arms and give us the strength, knowledge and patience we need for each day.

Donna

 

[vmd]

"May God wrap us in his arms and give us the strength, knowledge and patience we need for each day."


Amen!

 

[hearts_and_thoughts]

I also am sorry that you are scared and that your husband is in denial. It's tough for all involved. I take care of my brother who has bulbar onset ALS. He refused to use a bipap and for quite some time, I had to take him to emergency room for oxygen and I was giving him maybe a month to go on. But, he then conceded and got the bipap. For the first couple of days or nights, he struggled with adjusting to the bipap. However, he improved so very much that his oxygen saturation levels were great and he looked and felt so much better. He couldn't go to sleep without it after that and I think he regretted not getting it sooner. My brother has his own methods of working out his choking issues. One thing that bothers him alot is the thick mucous which 100% dark grape juice seems to help him with. He read it somewhere and he swears by it.

Bless you for the care and love you give your husband.

 

[CindyM]

My thoughts exactly. Bless all of you for the love and care you give each other.