For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in

Topic I Can't Believe this is Happening Go to previous topic Go to next topic Go to higher level

By ILoveWil On 2011.07.13 22:46
To you my special new friends...thank you so much for your encouragement and your kindness and advice. Only 6 days ago, I signed onto the Forum with such sadness in my heart for my Wil. Now only 6 days later, he has made an emergency move from the Rehab Center to ER in Sevierville, Tennessee. Within several minutes of getting him settled in, the Doctor came out to me and knelt at my chair to look directly into my face. He said this is the most critical moment of his life and now you need to make a life or death decision. You can just let him go or you can give us the authorization to go full code (Full Life Support) but you need to make the decision now. There is not much time. Wow what a shock to me. I said "I can't believe this is happening. Can this be reversed at a later date, one month from now, six months from now if he has not improved at all and I am holding him back from his life taking it's natural final step?" The Doctor said "Absolutely this can be reversed."

Wil had been for 3 weeks in the Rehab Center and he contracted a UT infection which sent him spiraling down and dramatically declining. Then he began to shut down and I thought was in a coma because there was no movement or change in him for 3 days, hardly any pured food taken or liquids. I made a move to insist that they take a urine test again and check to see if he was suffering dehydration. The next morning I was called to the Center for an emergency meeting where all the test numbers were explained to me. I approved immediate 911 transport to the hospital.

Now I came home for a quick shower and to freshen up before going back to the ICU where I have been in his room all night and will be 24/7. He is on complete life support but his parkinson shaking has of course mellowed and he is in a coma. Heart has been irregular, kidneys were shut down and are not funtioning properly yet, breathing is more natural. I was afraid to leave him even for an hour to come home. I keep talking and singing to him (I am a concert recording artist - singer) and I am telling him I want to bring him home to sit on the porch and watch the sunset again.

Will he ever remember what I am saying to him? Do you believe he hears me and is encouraged to know that I am with him during all of this? Please tell me what I can expect now? What has all of your experiences been with ICU and comas like this? I am trying to be strong and so many are texting me with encouragement but I really have been feeling afraid of the next few days. What are the possibilities of him coming out of this and being healthy enough to come home? You think you love your spouse but you never know how much you love them until you almost lose them. Yesterday I almost lost him.

Please forgive me for this long post. I am so full of questions, doubts, fears and a mixture of faith that God who is able, will bring recovery for him. I am quoting Scripture verses to myself of God's promises and encouragement. Thank you dear friends for being here. I love you all.

By shakydog On 2011.07.14 01:15
And I thought I was having a bad day……

Our thoughts and prayers for you both

By plcpainter On 2011.07.14 02:04
OH MY! What terrible news! I have heard, and read, that coma patients can hear and often remember what was said around them when they awake. So Sing! Sing your love, God's love, the love of friends, family, and Forum Friends to Wil! I can't help but think he will feel and hear the power of that love. Praying for you and Wil and holding you both close to my heart.

By karolinakitty On 2011.07.14 08:01
When called by the nursing home that my mother was on her way out, I sang to her until she did pass. I'm not a recording artist, just a small worship band singer, but, I believe she heard every note and every word. It seemed to make her passing easy as she was in great pain.

God knows your heart, knows the life you have lived together and knows your love for each other. If only for his love of the sunset, take him home and watch the sunset together if you know that's what he would desire. God always wants us to have the desires of our heart and if this is his and it is his time for his last breath, than he will see it and hear you sing whatever your favorite songs are. It will be a memory you will have until it is your time.

My prayers are with you and Wil.

By susger8 On 2011.07.14 08:53
I also believe that a person in a coma still has awareness of what is going on around them. By all means, continue to talk and sing to him. You both will be in my thoughts.


By poppadum On 2011.07.14 12:14
Dear ILoveWil, The feelings you have at the moment I know all too well. My husband had several heart attacks. At the age of 49 he was taken to a university hospital where after 9 days of tests and discussions between the professors/surgeons I was taken to a side room where I was explained his situation. He could live another hour or he could live for another six months. On the other hand the professors were prepared to perform experimental open heart surgery but they weren't sure that he would make it off the operating table alive, let alone live through the trauma in IC.
I was the one who had to decide because they couldn't tell hubby as the shock could kill him there and then.
(During those 9 days hubby was told that because he had been taking blood thinners he had to wait until his blood was back to normal.)
I asked for time to think but they said they needed to know within an hour.
It's surprising how fast one can think and yet it feels so slow. Was I to give hubby the small chance of a possible 6 months of life or should I take the risk...
It was an impossible choice to make so I asked the Lord for advice and strength.
And then came the answer: how could I let hubby live through the time he had left without any action being taken? He's no dummy. He would realize what kind of situation he was in. He would be kept in hospital and on all sorts of machinery in order to keep him alive as long as possible, or to try to revive him if his heart failed. What kind of life was that? And for the benefit of whom? For me, because I wasn't brave enough to let him go if his time had come?
I found the person in charge and said: "go for it!"
Hubby is now 68. Yes, he has Parkinsons, but since the day we found out for sure he started doing all sorts of things for his fellow patients of whom he thought that they were worse of than him. He wrote a book of poems and sold 1500 copies. The proceeds were used to set up a web radio for Parkinsons patients which works from Belgium (where we live). He uses his contacts to provide computers to Parkies who don't have the funds to acquire their own. He is constantly working with newspapers and radio stations in order to advance Parkinson's awareness because it is so misunderstood by people in the street, so much so that one day a Parky in our neighbourhood was left standing at a bus stop because the bus driver thought that the man was drunk.

Today I felt like a good whinge because I thought life was hard. Your moving message brought me back to reality: not I, but YOU are the one who has reason to be sad, upset, worried, to feel lost and abandoned...
I'd love to come and give you a big hug but since that is impossible I shall ask the Lord to advise you and to give you strength.
I'm a strong believer in that there's a reason for everything, although sometimes I forget. Of all the messages on the internet I had to read yours today, as a reminder of the reason for everything, but mainly to let you know that I feel for, and with you and your Wil. I so wish I could do more for you!

By gap2010 On 2011.07.14 18:28
Dear ILoveWil, My prayers are going up for you and Wil. It is such an ugly disease and we don't know from day to day what will happen. Thankfully I have not had to face this kind of decision yet, but know that it could be a possibility in our future. If that would happen I would like to know that others care and are praying. So please know that I am praying and keeping you and Wil in my thoughts. Please keep us updated1

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by by people like you