what going on

[wanda brittle]

glen and i are having a hard time here for a while.we know by june we have to make a choice about to vent or not!i am his soure of caregiving we have and tying too fine more but no luck.i am burning out and he is getting weaker by the week.i dont now what is the answer to all this anymore and feeling done in with this ALS shit.i want him to stay with me forever but i know ALS always win.we need help with his needs and no money to do it.i am so lost anymore with myself on what to do and making glen so sad and depress is not helping it to make a choice.hard times are coming and it brakes my heart everyday to see him struggling.i cant stop crying anymore but my love for him grows more with each day i have left with him.

 

[Twinsmom]

Oh God, Wanda...my heart breaks for you. I don't how I'm going to be able to face the days you are facing right now! Do you have anyone there to support you? A friend/pastor/counselor for you to grieve and vent to. I imagine you try to protect Glen from your pain & grief hoping to hold him up. Glen has been such a source of positive energy and humor here. I pray he's able to find his way back to that place where humor is his shield.

I will continue to have you and Glen in my prayers-for wisdom and clarity regarding his next steps on this road, and peace and comfort for your spirits.

Love,
Melody

 

[marywest45]

Dear Wanda, Just to let you know that both of you in my prayers. May God lead you in you decision and bring you comfort and peace. God bless, Mary

 

[mare]

Wanda-

I have no answers for you; I can only offer my prayers for strength & peace for all you are facing now. I admire you both; and know how much you & Glen love each other.
Sending you hugs- wish it was a team of nurses.

Marianne

 

[indigosd]

Oh sweet soul, if I could only lighten this load and remove this angst. What can I really do but hear your cry and send you unlimited love from the Prairie. What can I do? This shatters my heart. It is all so awful. I too am the only caregiver so I intimately understand exactly what you are saying and not saying. How does one make these choices and are there really choices when there is only one caregiver and no back up? Do not allow yourself to cover your life with guilt. We are doing the very best that we can with little to no resources. I soul understand. Please feel my arms around the both of you this very moment. love to you and Glen.

 

[kelly]

My heart goes out to you Wanda. Being faced with impossible decisions is absolutely heartbreaking. Feeling your pain..and sending you love and courage! Kelly

 

[brooksea]

I'm crying with you Wanda! I'm so very sorry it is coming to this. I wish I could help you somehow. Oh, how I wish I could help every cALS and their pALS make all of this go away!

All I can think about sometimes is - My God, my God, why hast thou forsaken me? But I insert us for me.

This is so hard! Please dear lady hang on! I hope you and Glen can come to a solution. I'm sorry I have none to offer you!

We all love both of you...............

 

[handinhand]

Wanda, I have watched for Glens posts from the very first start of my own journey on this forum... He has helped me so much along the way. I love his sense of humor and jokes and great answers to questions.... I can hardly stand watching friends and myself loosing our lives little by little. Then when someone leaves us it puts a huge hole in our hearts...Over and over again. Tell Glen for me that he has helped me and I love him for that. Wanda you are an angel and your love for Glen always shows in your words about him... I truly don't think the answer to the question about a vent can be right or wrong... I will share with you that I don't think I am going to get one.. Could change but for me I just can't see me living like that. It is wonderful for some and just not right for others. I just need to know that my Richard and my kids will be ok... Then I can do this ... that is the question? Please make my family be ok.... LOts of love your way, Linda

 

[BarryG]

Dear Wanda, how I wish that there was some way that I could help you both. All of this is just too awful for words and why do we have to make these decisions?

I was at my clinic today and my breathing has dropped from January so I will be on Bipap soon for at least sleeping. I have been going to clinic for well over two years now and just met the pulmonary doctor today, I guess it was time. One of the first things he asked me is how far do you want to go and what measures do you want us to take? If you have breathing problems do you want a trache? I am a long way (I hope) from having to make that decision but damn, I don't know!

May you both find the courage and strength to make the right decision. I am thinking of you.

Barry

 

[irismarie]

Oh Bugger bugger bugger. This isn't right! Love you all too much. Can you bear to dribble over Glen just for me, please?
LOve you both so much

 

[DgtofTNfan]

Wanda,

Sending positive thoughts and prayers for strength and comfort in making decisions no one should have to consider. Hugs to you and Glen.

 

[MtPockets]

Love is:
kind
unselfish
giving
a comfort in time of need
self sacrificing
companionship
wishing better things for others
denying yourself
making whatever type of life you have worth fighting to continue
Love worketh no ill to his neighbor
love seeks no revenge
without love, their is no true life
for love is of God

Feel free to add to the list.

 

[Ratman55]

Wanda and Glenn,
We are all bound together in hope and courage, and even despair.
Dear God, Creator of the Universe, let our common bond help to dilute the feelings of despair in our friends Wanda and Glenn. Amen.

 

[abbas child]

Amen. Wanda, I so feel for you, and all you caregivers. It really is too big a mountain for one caregiver to climb, no matter how much love is there, and how competent you are. Is hospice available for helping you?

My own thinking is that being kept on a vent and prolonging the caregiving would possibly shorten Phil's life. Speaking only for myself, I believe utterly in the reality of heaven and that Jesus will be there to receive me... it was He who was forsaken while taking our sins upon Himself, crying out "Why have You forsaken ME?", but CJ... I do know exactly what you mean, and the feeling that you're alone. You aren't, however. When the anguish is awful, I talk to Him out loud and tell Him what I feel and ask for help, and He has answered me, sometimes very quickly, sometimes after a wait.

Thank you all for your love and tenacity in caring for us... but please don't feel there's only one right way to proceed. My hope is that your loved one will make the choice, and then do the advance directives so you don't have to make that choice for them. If there's dementia involved and no advance directive, I just pray you'll have both wisdom and strength for the right answer for you.

Much love...my heart cries for you.
Ann

 

[CAHPAH]

Wanda
Just wanted to add my best wishes to everyone esles. As a primary caregiver I know much of what you are going through. It is not easy. Simply know that you are not alone and that many many people here on this forum are sending you lots of love and many prayers.

Jim