Mikey and me.......

[monrein]

 

[Mimi]

Marley, I am so sorry all of this is going on with Mikey.  Plese know that you both are in my heart and prayers.

Love, Mimi

[Joe Paul]

I pray Mikey soon gets better, and you have some peace and rest in your life. God Bless   

[willieandwinnie]

Marley,  please know that you and Mikey and in my thoughts and prayers.   

[rose1999]

  Wish we could do more 

[pelagia]

Thinking of you and Mikey and saying prayers that Mikey starts to get stronger. 

[del]

 

[The Wife]

 

[petey]

Keep taking it one day at a time, Marley.

How's Mikey today?  You two have been on my mind a lot lately.

[Marley]

Well, today was not so good and I feel like I walked through a dream from around 2:00 on and I still feel pretty numb.  Mikey's labs came back from yesterday--liver panel--and we now have an answer as to why he's not himself, his liver is in horrible shape and throwing out enzymes--he's developing small blood clots from his liver, I don't understand that yet, but I haven't been on my medical encyclopedia site yet eiether.  And he mentioned "DIC" twice and just said "it's very bad".  He told us that his system is shutting down and said it was time for paleative care and hospice, one or the other or both..... ??.....can't remember.  I met the doctor who does this paleative care, we sat down and talked about what Mike would want to do and I know (and what I want to do)he would want to stop dialysis, so it was up to me to say yes or no---I did what I thought my man would want if he could talk right now and I'm praying I said the right thing.
Last month shortly after we found out his new valve was leaking, we talked about the possibility of him dying.  He brought up how the dialysis tech told him "it's an easy way to go", when someone stops they're treatment and it might feel like choking to death with his CHF.  If he had a choice; and he did, he told me he would stop dialysis.  OMG, I hope I'm doing what he wants me to do!!!  His poor heart has just had it and there is no way of fixing it.  He is "not all there" right now and one of his biggest worries when we first found out about his kidneys, his first reaction was that he didn't want to loose his mind.  If he was aware of how he is acting and talking, he would be humilliated and so embarassed, he would be telling every nurse he saw how sorry he was and hope he didn't cause problems!!  He has been in this state of confusion and hallucinating for a while now, but consistently since Thursday.  I chose to stop dialysis.

One thing he never did was to sign that advanced directive and I'm a little worried about that.  Can anyone tell me what I should expect?  I have already told (and his docs know this) everyone that he does NOT want to be kept alive on a machine, his doctor has known that since the beginning.

I've been holding out hope that Mikey would "snap out of it" like he's done for years.  Today my hopes were crushed down flat and now I've got to get things ready to bring him home so he can go in his own home, I promised him he wouldn't die in a hospital and that I would bring him home when we got to that point.  We're at that point  and now I'm wondering how the hell I'm going to get through this!!  We have 10 grandkids; 8 of which live in our town and the oldest one is 9.  How the hell do you tell a child they're Grandpa is gone?  THIS SUCKS!!!!!!! 

[paris]

Dear Marley,  I am sitting here in tears.  You and Mikey have fought long and hard.  We have all been praying for him to rally one more time.  I don't have the words to tell you how much I am hurting for you and your family.   I will continue to keep you all in my prayers.   We are all here for you, surrounding you with our love and support.   I pray God will hold you in the palm of His hand while you go through the next few days and weeks.   And angels will lift you with their wings and stand beside you.   Sending love and prayers    

[rose1999]

Oh Marley, I am so sad to read this. You have done the right thing, you know it is what Mikey would have said if he could. Four years ago I watched my husband die, I could not bring him home as he was too ill to move and the cancer that had spread to his bones made every movement painful despite the morphine.  I also didn't feel it would be good for my boys to live through it all.  And finally I could not get any help so I would have had to look after him 24/7 with only 1 visit a day from a nurse.  I just could not do it.  I knew Barry really would have wanted to die in his own bed if he could but his mind had also gone by then and he didn't know where he was.  He too would have been embarrassed,like Mikey, but because his mind had gone mercifully he didn't know he was doing it.  It is hard for us to bear but I believe it makes it easier for them if they do not know what they are doing or saying. We surrounded him with love and made sure he knew he was never alone, I was able to stay on a reclining chair in his room over night and that's what we did.  At the end he just passed peacefully and I have no regrets about what I did.  I hope you can find the same peace and quiet for yourself and Mikey, may God bless both of you and make this time as gentle as possible for you both.  You can and will get through this, it will be hard but you can do it.  Sending you lots of love 

[willieandwinnie]

Marley, my heart is broken for you.  I'm sitting here in tears and wishing there was something I could do. Please know that you, Mikey and your entire family are in my thoughts and prayers. Please know that we are all there with you to give you strength. 

[aharris2]

Marley, this is so devastating. We have been hoping and praying with you all along the way. We have been quite impressed with your strength and are so sorry that Mike doesn't have his miracle (yet).

You asked about Mike not having signed an advanced directive - this is a good thing because it leaves all of the decisions in the hands of someone who loves him - you, his spouse. By law in our state and most likely yours too, as the spouse all decisions become yours in the event of mental incapacity. You know Mike best and love him dearly. Be secure that you will make all the right decisions for him.

Hospice is an organization that will help, in our experience free of charge except for whatever they can get from insurance. They will quickly get you whatever you need to bring him home - a hospital bed, oxygen, pain meds, and will provide home visits by nurses, and people to help with personal care. They will make sure that Mike does not suffer. They'll be there for you too.

We are here for you too, hoping and praying that Mike gets his miracle.
 

Alene and Rolando

[del]

Marly  to you.  This is so sad but I am sure you are doing the right thing by following his wishes.  Look to your family and friends for lots of support.

 

[pelagia]

Dear Marley, I read your post and I can feel the love that you have for Mikey and the courage it takes for you to make the decisions that he would want you to make.  You are a strong person and I believe that your inner strength will help you to get through this very difficult time.  I will continue to hold you and your dear Mikey in my thoughts and prayers. 

[monrein]

Oh Marley, you two have been through so much together and from your very first post here your incredible love for Mike has been abundantly clear and frankly inspirational.  I think your heart knows exactly which decisions Mike would make for himself, were he able to, and you also know that he literally trusts you with his life and with its end.  I hope you don't second guess yourself too much.  You are lucky to have had each other's love and Mike is blessed to have you there for him now.

Please know how much we care about both of you.   

[petey]

Marley,
I wish there was something I could say or do at this time to ease some of the pain and enormous stress you're feeling right now.  Unfortunately, I have no words that are adequate to help you.  You should do what you feel is right for Mikey and what Mikey would want you to do for him.  The choices that you'll have make will be difficult, but use your inner strength, your love for Mikey, and you "gut feelings" -- and I know you will make all the right decisions.  My prayers are with you and Mikey.

[okarol]

Dear Marley - I think all you can do for the grandkids is be an example of how we take care of our loved ones when they are at the end of their lives - giving Mike good care and comfort and dignity. I am so sorry and I wish things could be different. I admire your strength and devotion. Take care.

[Mimi]

Marley for sure you are making the right decisions.  There is no one who knows him and loves him like you do.  You would not let anyone else make these decisions.  You are traveling a rough
road, but strength will come to you through family, friends, and the precious Son of God. We
continue to walk forward and make decisions during these rough times because we have to, there
is no other choice.  Hang onto God's hand and He will see you through.  You and Mikey are in my
heart and prayers.  Please remember we all love you.


Love, Mimi

[lola]

Marley
   My heart is just breaking for you, you guys have been through so much. I wish there was something to say to bring you comfort, just know that we are all here for you.

[Marley]

Hey friends
I spent most of yesterday getting things ready so I can get Mike home.  I had slept right through my alarm clock and around 9:30 the hospice nurse called and said she was down at the hospital.  I met her there and the ambulance was already there too, wrong day to oversleep!!  can't believe I did that.  She told me the pain patch they put on him yesterday has kicked in and he is in a deep sleep.  He didn't even budge when the EMT's wheeled him in and got him into bed.  He hasn't budged since eiether. 

Oh man, he's in a comatose state right now and has only opened his eyes once and he didn't see me. He was talking a little just two days ago!!  He's in the hospital bed with clean sheet and the quilt our Auntie made us last year and is all tucked in, if only that damn bed was a little bit wider, I'd crawl in it with him!!  Too bad I'm so "fluffy". 

I'm holding it together pretty good right now, my son doesn't like it if I cry in front of Mike.  He didn't really understand how really close he is, he sprayed air cleaner becauese I had a cigarette earlier in the house.  He said I shouldn't smoke in front of him because he will want one too--I tried telling him he will not want a smoke, but I would smoke outside.  My poor son, he and Mike are very close and I know this is extremly hard for him to accept.  Both of us are used to seeing him get very sick but always come back and it's obvious he isn't going to do that this time.

Thank you all for thinking about us and the prayers

[rose1999]

Still thinking of you, still so very sad but I am so glad you have managed to get Mikey home.  In the times to come you will have the comfort of knowing that you did eactly what he would have wanted if he could tell you.
God bless you all 

[petey]

Marley, I'm glad you got Mikey home.  I feel sure that that's where he would want to be.  You are a strong and brave woman, and my heart goes out to you at this time.

[willieandwinnie]

Marley. You and your family continue to be in my thoughts and prayers.