Caregivers Sharing, Part 18

Welcome to Caregiver's forum...I certainly understand your frustration...and can tell that you are at wit's end with all that is happening to you and your husband. You have to be so so exhausted. I am so sorry that you are going through this.

My husband passed away with Hep C ESLD, 2 1/2 months ago. (After outliving his diagnosed "death date" by 1 1/2 years.) But after caring for him non stop by myself for 9 months and having to quit a job...then dealing with financial matters...and all the things he handled (caring for 20 some horses)...we tried a nursing care facility and I was furious the whole time at the care...all the unnecessary meds (I am a retired atty, so used to speaking my mind, and am not a wimp...but the medical system can almost bring one to their knees...even the strongest...as they struggle to help their loved one.)

I brought him home finally (as he was in bed at the NH 20 hours a day), weaned him off of many of the meds, and worked to balance his diet v. keeping fluid off of him. (Nursing home food was horrible..and unhealthy...NO fresh fruit or veggies, staff snuck him in a huge jar of Pickles (salt !!).etc etc. was a nightmare.)

Once home, with a better diet (we had been eating heart healthy and for a diabetic for years, so the NH food was quite a shock)and weaned off lots of meds, his quality of life got better and better and he had another 9 months of a good quality of life (for someone with ESLD) while at home.

I feel for you, Arlene. It is a nightmare to have the knowledge and know that what is being done is not best for your man. Well, I better get off my soapbox. Many a day/night I blasted away on this forum...and those on here helped me through with words of comfort, information and humor. May you find that here also.
Angie1953

Hate leaving Mike for the day, he is ok. It is me that gets so much anxiety leaving him, I want to stay so I can see that he is ok. Monday is the worst, it gets better as the day goes on because I know I am going home to him soon. Thanks for listening.

Arlene,
The above post was true on the good days....on the bad days...it was a struggle to get through the day...big struggle...and the emotions were so strong...worry...concern...anger...despair.

Thinking of you and hoping you come home to a good day today.
Angie1953

Here's hoping his liver appointment tomorrow goes well. Nice that your daughter is taking him and that you can alternate. Hope the results of appt are even better than you expect. Go softly into the day.
Angie1953

Well it has been a bit, Mike is back in the hospital, he threw up blood and is undergoing different tests etc The usual. He is strong, and I live in fear every day. Going to work now and up to university hospital in Newark NJ later to see him. Just got to get through today. thanks for listening.

thanks Angie

Arlene,
Sorry you are feeling down this morning, but certainly understandable. Bummer about losing you pointer. Always hurts when one of our animals move on to their future journey ... and leave us behind with memories only.

Hope that Mike staying in bed and resting will help his acites and swollen feet. It always helped my late hubby. Sometimes after sleeping or staying in bed for over 24 hours, most of the swelling and acites would be gone, For him, I think his liver could do it's work if he was down resting, doing nothing for a whole day and night. Then he woud feel better for a while.

I am thinking of you both and sending wishes of comfort through such tough times. Hang in there...it is tough, I know.
May you two have at least an hour of "a good day" today. I know if doesn't sound like much, but can give you hope for the next day.
Take care.
Angie1953

Good morning Robin....

No, your family isn't catching any breaks here lately....what a horrible spring.....one thing and then another.

But daughter is #1 right now!  PLEASE keep us updated on her surgical schedule, your procedure schedule and Mark's progress. Thank goodness he is stable at the moment. Though you can never be sure with liver disease.

It's like there is a cloud over your house...and Connie's. 

Many hugs to you,

Carol

Tim and Leslie

I am going to start a new POST thread on your topic as it is important and you are new. You need your own thread.  Post your stuff on this thread for a while...it will be YOUR thread with folks popping in.

Others should continue to post Caregiver stuff as usual.

Mama Lama

ALL of FL has shorter wait times than other states, partially due to no helmet laws. Due to the warm, sunny weather, there are lots of sporting accidents, too.

I believe that Mayo has the shortest wait time (I was transplanted at MELD 25 after 3 mos. on the list), but I've heard of short wait times for other FL transplant centers, too. So I'm sure your doc did not mean to be specific when he said, "Go to FL."

I hate to say it, but liver cancer that has not metastasized can be a blessing. It boosts the MELD score to 22. Then one also gets an additional 3 points for every 3 mos. on the list, for everyone--not just those with cancer.

Mae or myself can tell you about Mayo. Carol can tell you about Jackson Memorial. We also have caregivers whose loved ones have been transplanted at Tampa General and in Orlando.

Hugs,
Connie

Oh Arlene!!
I am so sorry you feel guilty for having to work and not being able to be with your hubby while he is so sick. I totally understand that feeling and it really tears one apart, I know. I was in much the same situation in that I took care of my hubby for a long time and just expended all our resources...and HAD to go back to work and leave him home alone while I worked. He only lived 1 1/2 months after I went back to work. It broke my heart...and I still feel that if I could have stayed home and taken care of him, he would still be alive. So,,,yes I truly understand the guilt thing.

But...If we can't keep a roof over both our heads, and food on the table and gas in the car, we can't go on either...and one of you has to do it and he can't. SO...that is your role in the mix right now. If he is in the hospital, he is well cared for. You go ahead and do what you need to do for both of you...work and see him when you can. (I know this is so very hard...been there and it is hard to work when all you want to do is go be with them.) If the shoe were on the other foot, and he was the one having to go to work, and you in the hospital, you would understand and appreciate that he was working to help you both.

But I so understand how much you want to be there, advocate for him, encourage him and comfort him. If you can set aside the guilt, it will be easier to do all those when you are with him.

Throughout your and his life together, there were probably many times each of you HAD to go and work when you would have rather been with each other..but you both did what you had to do. It is the same now....I know it doesn't feel that way. I am thinking of you and your man today ... and will send you strength. This is a really tough path for a couple to walk...and only the strongest hold it together. He probably knew you were a strong person when he choose you as a partner...and now you need to be strong for him, and that includes working, without the guilt ... so when you are with him you are with him 100%, not riddled with guilt. So please, get a Mason jar (or whatever closed container you like), write down what you feel guilty for, stick it in there, put a lid on it and let that jar be the spot to put your guilt as the two of you fight this disease. (Just an idea)

Take care, lovely caregiver. Chin up...Find the "Good thing for the Day" to take back and share with him. A hawk you saw....a dollar bill you found on the street...etc

Best to you. I have to get ready for work.

Angie1953

Post Edited By Moderator (hep93) : 6/27/2013 11:38:08 AM (GMT-6)

Arlene, I faced that terrible decision. I worked nights. During the days I took Mike to doctor appointments. I opened the door to our house every morning always fearing the worse. It was part of our every day existence. Somehow one learns to get through these times. It's not easy and at the time I just focused on what Mike needed and what we needed to survive financially. There are no easy answers. Our strong bond brought us through. That and faith.

Sandia

Arlene, just before Mike got the "no treatment" and six month label... I had been looking for a job with the state of Minnesota... one month into this period of time I was offered a high paying job. I had to turn it down. Mike insisted I take it and commute an hour one way. I told him no. It would have meant 12 hours a day away from him rather than just a little over 8. I honestly don't know if I'll ever be offered a job like that again. I don't care. I just don't care. Taking care of Mike was more important. I have family who judge me. Oh well that's their problem.

later Sandia