I Just Need To Scream!

[willieandwinnie]

  I have had a really bad couple of weeks and I just need to scream at somebody. Len started with bad Gastroparesis on Monday the 4th and things just don't want to get better. I kept him drugged up all week and his weight went down from 138 to 129. We can't get a handle on it this time so yesterday I took him to GI doctor and GP. The GI said he wanted Len to get a feeding tube, if nothing else to be able to release some of the pressure building, sort of like burping. Len refused, saying he had a feeding tube and TPN and does not want it again. GI and GP called Neph and they have cut some of Len's medications again, he is only taking .5mg of prograf twice a day and they took away another blood pressure pill and lowered the dose of reglan from 10mg to 5mg, and refilled his pain medicine. I have been running around dropping off prescriptions (have to pick them up tomorrow) and mailing some off. I have to time it when I leave so I'm home in time to give Len another shot of pain medicine (I am very thankful that GI doctor lets me give him shots instead of going to emergency room all the time). I swear it's a full time job keeping up with this. In the middle of all this, my daughter called to tell me that my ex-father-in-law (more like my Dad) was put under hospice care. His bladder cancer that was not caught soon enough has now spread everywhere and they are only giving him a month or two. I went to see him on Tuesday and cried non-stop for hours. He knew who I was and I got to tell him that I loved him and thanked him for everything he has done for me and my children. I am bawling again just typing this. I feel like I live in this sad bubble and no matter what I do, I can't get out. My children are now concerned about my mental health (not that I had much to start with), but I don't want them to worry about me. My daughter is trying to get my Granddaughters high school graduation stuff done and my son is trying hard to just make a living in this economy. I didn't mean for this to be so long but I just had to get it off my chest. I just knew that you guys would understand and have some words of comfort for me. 

[G-Ma]

Oh Lord, I feel so sorry for you.  Lots of prayers and huge hugs coming to you and your family.  I'm asking all my angels to surround you.


 

[Sluff]

willieandwinnie, you have a lot of weight on your shoulders right now and I know sometimes it feels like it will never get better. I believe in God and I believe everything happens for a reason. You and Len are together because you were meant to be there for him. Yes it is a full time job, but you do it because you love him. Your children will be fine because they have been given good examples through you and Len on how to survive the hard times. Everything you are going through is truly just a testament to others (mostly your children) of the Love you have for each other and proof of what we do for our loved ones.

I hope this brings a little encouragement or at least it sheds a different light on your situation that maybe you can't see because you are so close to it. This reminds me so much of Kitkatz and Victor when He lost his leg in the accident and she was facing all the medical challenges. I have met them and they are so strong together it is very evident and I think the same of you and Len. 

[paris]

WillieandWinnie,  I think we are all crying with you.  You have been a tower of strength for so long.  Lean on us for awhile, at least for emotional support.  You are loved and admired by everyone here.  My heart aches for Len. He has endured so much.  But, his life would be so different without you. You give him reasons to keep going on.  You make his favorite foods when he is up to eating. You make sure he gets his pain shots so he isn't in misery.  He must think you are his real life angel.  Your children have been given a wonderful example of love and devotion.  That is a precious gift.   I am sure they are extremely proud of their Mother.  I am.      

[twirl]

    to you
    to Len
    to Willie
    to Winnie

[jbeany]

Screaming is a good thing - it's proof you're still breathing, at least.  Hang in there, dear. 

 

[MIbarra]

W&W,  .

I'm so sorry to hear all of this. It sounds so overwhelming.

One MIbarra and two Yorkie Terrors from Texas are thinking about you tonight and hoping things get better for you.

[mcmkids]

You go right ahead and scream, after what you are going through, you deserve it!! Know that there are a lot of friendly ears around to listen. I know that this may seem overwhelming now, but you will get through it! God Bless and keep posting!!







EDITED:Took blue color out of post-kitkatz,Moderator

[David13]

W&W, I am sorry you are going through so much.  You just keep giving and giving, and sometimes you really do need to just let it all out and SCREAM!  Go for it! 

We are all here for you and for Len.  I am hoping things start to turn around very soon for you.   

[MandaMe1986]

I am so sorry. You come and scream at us all you need.  I am have you guys in my prayers.   

[willieandwinnie]

  I have my own personal angels. Thank you. 

[Romona]

  I hope things get better soon.

[okarol]

I am sorry WAW - it just doesn't seem fair - you take care of so much. I am sorry it's been difficult for you and Len - and I am so sorry about your dad. Big hugs coming your way - please keep screaming and we'll love you back!

[aharris2]

w and w,
I hope Len gets beyond this bout of gastroparesis soon and I'm sorry about your "dad". Here's another  coming your way.

Alene

[kitkatz]

It is so hard to be caregiver and have the roof fall in on you. You feel like you have to pick up the pieces and some of them just get bigger and bigger.  Let go of some of it. Come here and de-stress at us!  Let some of the little things wait until you get to them.  Be with Len when you can. When you can't take anymore escape for awhile- Grocery shopping, reading, whatever you need.   Hugs and love to you and Len and your family! 

[monrein]

Kathy, I was so very saddened by your post and by all that you're going through.  You have all of us thinking of you both and sending supportive thoughts your way.  A massive hug to you and a softer, gentler one for Len.  Come here and vent your screams whenever necessary.   

[pelagia]

I often think of you and all you have been through.  I don't know how you do it!  I am sorry to hear that you have even more on your shoulders than usual.  Those are heavy burdens.  I hope the thought of how much your IHD family cares about you will make the weight seem a little lighter.  Please try to find a few minutes every day to do something for yourself.  You need to recharge!  Please also give Len a hug for me.
 

[petey]

Kathy,
Your post made me cry; my heart aches for you and all you're having to deal with right now.  I was glad to read that you got the chance to visit with your ex-FIL and tell him how much you loved and appreciated him.  I'm sure it meant an awful lot to him, too, to have you there.  You know it will be difficult for your children when their grandfather passes, so I know you're thinking how you'll need to be there for them at that time, too.

And bless Len's heart.  That man of yours has been through so much.  I know you must be wondering, "How much more does he have to endure?"  I know from some of your past posts that Len doesn't want another feeding tube, and I know you must honor his wishes.  Is there anything -- anything at all -- to get a little of that weight back on him?  I know you've probably asked a million times, "What else can we do?"  I wish there was something I could do to help you now.

What a tough "job" caregivers have.  But, I must say that you have handled it all with such strength and courage.  I admire you and aspire to be more like you.  In spite of it all, Len is a very, very lucky man to have you there beside him every step of the way.

I'm going to ask God to hold you and Len close to his heart and give you more strength, more energy, and a "break" in the dark clouds.

Love you!
Marsha

[glitter]

I hope things get better for you guys, its  hard being the 'strong' caregiver all the time. Although you do such a wonderful job, I know how hard it can be. Your guy is so lucky to have you. Sending you a hug and some warm thoughts. I wish I could do more to lift your load. 

[Hanify]

Sending good thoughts and prayers your way.  You are a saint!

[Yvonne]

I too, as a caregiver send you and your family good thoughts and prayers.
Reading your post brings back so many memories of what I went through with John. How old is your Dad? John was 71 back in July 2007 when he was diagnosed with renal failure and bladder cancer they gave him 4 weeks to live. I said to his GP please operate John will take anything you throw at him, he is still with me after having his bladder and kidney removed.  We have had our ups and downs and still are and it is only this site that has got me through it.
I am sure all these good wishes and prayers from the good people on this site do reach our loved ones. It helps so much to write our feelings down. Take care Yvonne.

[petey]

Kathy -- how's Len doing today?  I can't get you two off my mind.

 

[willowtreewren]

You have been on my mind, too. I hope today is better. 

[Red from Canada]

WAW. I had just been diagnosed with gastroparesis and have been put on Domperidone 4X per day.  What a wonder drug!  I know it is not generally available in the US yet, but I think your doctor can prescribe it under special circunstances.  I hope Len feels better soon.

[willieandwinnie]

Hi everybody. Thank you all for your thoughts and prayers. I'm going to take a few minutes to update and then I am going to church. Len actually slept last night  He said he was hungry, the first in 2 weeks. I fixed him some cream of wheat so we will see how it goes. It is raining here and he said he wanted to just sit in his chair this morning, another first in two weeks. I have spent a lot of time in a dark bedroom lately, just sitting with him. My daughter told me yesterday that my ex father in law (he is 78) had a pretty good day yesterday, that made me feel better. Yvonne, they took his bladder out about a year ago but the cancer came back really strong and has spread to other organs. Makes me so sad. Red, the GI doctor said last Wednesday that he really doesn't want Len on Domperidone because of his heart. They actually lowered the dose of reglan and took away 2 doses, we shall see on that one  It really is a wait and see disease isn't it? petey, I take one day as it is thrown at me and still do my crying in the shower (you know all about that). I missed my granddaughters theater awards Friday night and I'm still upset about that, but what am I going to do? I guess Len and I really thought that having a transplant was going to make life better, but it hasn't exactly turned out that way. The GI doctor said that once the Vegas nerve is damaged it is done. He said that it could of happened during the transplant or during his many abdominal surgeries, we will never know for sure. Keep sending those prayers and good thoughts everyone and maybe this set back will turn around. Just for the record, I am not a saint  I'm a pretty good caregiver though. kitkatz, I think about everything that you have been through with Victor and yourself and I admire your strength and courage and I am taking your advise with just sitting with Len when I can, this morning I need a break and I am going to church and ask for some more strength and patience.  Thank you all for your kind words and hugs, don't know what I would do without you.