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Caregivers Sharing thread #15

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Posted 11/1/2012 5:43 PM (GMT 0)
New thread time!
Posted 11/4/2012 3:29 PM (GMT 0)
It is Sunday morning and I am listening to NPR and working hard to calm myself and just have a cup of coffee and pretend life is "unfolding as it should." Reread AZiffle's post about Male ESLD. Thanks again A Ziffle.

Yesterday went to funeral home and talked with staff about "arrangements" for my hubby. Feels like I am rushing things, but hubby's Dr. keeps saying make your arrangements, so went to do so. Felt like such a betrayal to hubby, as he keeps saying he is feeling better, but is asking for stronger painkillers. He didn't want to go with me.

On the bright side, the young (40ish) man that now owns the funeral home, commented that every time he drives by our place, he sees "the red roan filly" and falls in love with her all over again. Says he always has to borrow a horse and wants one of his own. Also in our conversations, he explained he wants his daughters to start horse 4-H this coming Spring and will be looking for horses for them.

He does have a place for horses and would provide a good home for them. His daughters have been coming to our petting zoo, riding our ponies for a number of years now. They love horses and their Dad believes growing up with horses will help them become better and more responsible persons,,,I think so too.

So yesterday I spent all day working with several of my horses, keeping in mind that perhaps three of them could go together to a wonderful new home this Spring. Not a sure thing, but a good plan for them ... and me.

When I tried to talk to hubby about how we can plan to set aside money for cremation, he became really angry, even though I reminded him of what Doc advised. He commented that if we sold his things, he would be worth nothing. Seems like this should be something we can talk about and make plans for without "fighting". He wants to just do nothing about any of it, and then "when I go, you can do what you want." However, I want to get things planned and in place, so that I am not struggling at the last minute as to how to handle "final arrangements."

Hospice is still not an option for us, as hubby won't agreed to stop treatment (won't say no to transplant for sure, won't say yes either). So here I am in never never land with hubby talking about getting his passport renewed, talking about traveling to Alaska and Mexico, while I am trying to get his cremation plans in place. Ugggggg!! Feels like we are on two different planets.
(Mars and Venus). A Ziffle, perhaps some insight for me from the male prospective..or anyone???
Angie1953
Posted 11/4/2012 4:15 PM (GMT 0)
Angie, you know what his mental state is right now. Not wanting to be involved in the final arrangements is denial on his part. He can't wrap his mind around the fact that he may not be here long.

How many horses do you have?

Hugs,
Connie
Posted 11/4/2012 5:07 PM (GMT 0)
Angie , Sorry but I don't comment on this thread as indicated earlier when posting JohnCTs letter to his wife . This is specifically for caregivers and allows them the freedom to express their feelings without fear of reprisal from what can be seen as hurtful to the patient ( A much needed sanctuary for you and others ) . This thread was hotly debated in the past and the decision albeit self imposed is for me not to post here . I am biased as a patient and refrain from posting where my experience is minimal or non existent . Thank you for being here for others .


A. Ziffle
Posted 11/4/2012 5:32 PM (GMT 0)
He wants to just do nothing about any of it, and then "when I go, you can do what you want." However, I want to get things planned and in place, so that I am not struggling at the last minute as to how to handle "final arrangements."

Take his advice. Make your plans now.
Posted 11/4/2012 8:22 PM (GMT 0)
Thank you all. A. Ziff okay, I understand. Will read what you have to say on another thread. David, ok thanks for the input. Connie..denial, yes I can see where if you are the one whose life may end shortly, you might want to pretend that isn't happening.

Okay, I am in denial, too. I want him to help me through this...and he can't. And I am having a hard time accepting that (tears). I am going to have to get a little more backbone and realize I am going to have to do all this "end of life" planning myself. Okay, all. Thanks for the "wake up" call and the reality "punch in the face." I will get this "end of life" plan done myself today!! And stow it away and move on....to something happier.
Angie1953
Posted 11/4/2012 8:42 PM (GMT 0)
Angie,
Thinking about you and sending you strength to deal with these difficult decisions. It is so hard when the one you want to assist you and comfort you is not able to...the reason for the stressful situation. I know during my mom's last days, and then the days following...and the service, there was nothing more I wanted than to be able to talk to her and tell her about it. How all the family was there for her, gathered around her...lifting each other up and comforting each other. She would have been so proud of us. As I go through mourning for her, I want to tell her about things I am feeling and going through...and of course, I have to just speak to her mentally...or aloud when I am taking a walk. This all just sucks. And you just have to move through it. Keep posting. Let off steam...share your fears and tears.
We are here for you.
Hugs,
Emma
Posted 11/5/2012 1:04 AM (GMT 0)
Thanks for the support Emma. Can't imagine losing my Mom, she is who lifts me up and gives me strength. Luckily, she is healthy, eventhough she is 85. Thinking of you Emma, about you wanting to talk to her and not being able to. That takes my breath away, just thinking about it.

Proud of myself. Finished all the funeral/cremation paperwork and obituary and put it in an envelope to take to funeral home tomorrow. It took 3 attempts, but it is done. Painful, but feel better now that it is done. Hubby says he is loosing the ability to read and getting more and more pain. Guess, I'm not surprised,but still didn't need to hear that.

Lighting a candle tonight for our forum's loved one that got/or is getting a new liver today. Hope it happened and all is well.
Angie1953

That time change is a shock. Seems like it should be 9:00 PM, but only 6:00. Perhaps, I'll put a movie and and relax.
Posted 11/5/2012 1:11 AM (GMT 0)
Angie, the fellow who has the little girls who love horses, might it be good for them to come to the farm this winter to learn how to groom and muck?  Help a bit, add some company in the barn.  Give their Dad some foreknowledge of what he's in for come spring.

And winter is sometimes hard and cold for horse lovers.

And here is a happy story:  Our middle child, 37 with hubby and 3 kids, is a horse lover and from time to time has had a barn and animals at home. She has had to give that up for the near term for various reasons, but she has "leased" both her GIANT Percherons to a service that provides matched pairs for weddings, funerals,  and films.  They are living about a half hour away and she and the kids go out on a nice weekend day to bring carrots to all the pairs and to bathe and brush Seth and Loretta....to spend some time, until they can have a barn of their own again.

Thinking about you tonight, knowing my whining over a fever is silly, really, when Mike has done so well for so long.

Hugs,

Carol

Posted 11/5/2012 3:00 AM (GMT 0)
I didn't hear any whining, just legitimate concern.
Posted 11/5/2012 3:59 PM (GMT 0)
Carol,
I agree with David.
Mike has been doing well, but he has also had his share of challenges. Part of his doing well is because you have been there for him. Always. He is lucky to have you.
Take care.
Emma
Posted 11/5/2012 11:38 PM (GMT 0)
Carol,
Hey I would be concerned about a fever....that's not whining. You and Mike have been through a lot recently. Loved the story about the Percherons. Half of mine are minis (36 inches and less), so they are like having mischieves big dogs. They do make me smile when I go outside. We have a mini donkey and the horses have chosen him to "call out" as soon as I go out the front door, just to make sure I don't leave without feeding. Good idea about the little girls coming out for "horse time."

Tonight I am wishing that I had kept more of the love letters that my hubby used to write me from "lands far away," so I could remember, even briefly, that kind of affection we had for each other. I so wish I could say that his being ill had brought us closer together, but it is just the opposite.

I am very discouraged that as a couple, we just can't seem to pull together, and be "content", if not happy, with the life we have. Sometimes I think we had such a wonderful run at our lives for so long, we (I) don't know how to help each other (him) through adversity. That is a disheartening thought. I like to think of myself as strong, but find that "being strong" somehow means "shutting him out". I want to have a more "open heart", but it is really hard to do, and I'm not sure why. He can't seem to comfort me and I can't comfort him. I know that he is the sick one and probably can't comfort me...but why I can't comfort him is a mystery. He seems to want to "get away" rather any type of comforting. ?? Hard to see the Forrest for the Trees in this situation.

Thinking of all you caregivers out there and your loved ones. And do hope you all get some rest.
Angie1953
Posted 11/6/2012 8:15 PM (GMT 0)
Hey Angie,
Thinking about you. Hope you are hanging in there. It's must be so hard to be forced on a journey you never intended to be on. I wish I had the magic words that would make it better for you. I hope that today is a better day for you.
Emma
Posted 11/6/2012 8:24 PM (GMT 0)
Angie,

Mike was really surprised to hear about the heater!  Oh, my...you have your hands full, girl! 

How's the job going?

Best,

Carol

Posted 11/6/2012 8:44 PM (GMT 0)
Emma and Carol,
Thanks for the words of encouragement. Oh yeah, ...the job. Still waiting for a start date from the boss. (Although I have had to start applying for other jobs, as this seems to be dragging on with no income!!) ughhhh!!

But, at least I don't have bronchities and physically feel okay. Hope you are feeling better soon.
Angie1953
Posted 11/8/2012 1:04 AM (GMT 0)
Reading all this helps me and scares the crap out of me at the same time. I am very fortunately to have a huge family to help with care, now that we got my son to go home. Unfortunately, I am still in New York, where I moved 2 1/2 years ago to "SAVE" him. I am working hard not to go down bad roads of what I should have done differently. I am hoping my son will give up his apartment here so I can empty it becasue he moved, not because he died. Luckily, I have a boyfriend who is a 6 year clean addict/alcoholic, who can help me remember this is not my life to live. If is so hard to let my son be an adult when he is not acting like one. He wants all the control but none of the responsibility. He flew home today and two of my other three kids were just yelling at him, about how can he do this to us (he drank two hours after leaving the hospital after a one month stay). I am at work although my brain no longer functions. It is my escape from dealing with the reality of what is ahead. Tonight my niece, who works on the hospice floor at the hospital, is going to explain what hospice is. He thinks it is people who come over to help you stay sober. I can survive this and I am grateful you are all there to help. I feel like I am just holding my breath. Angie, I can really relate to so much you say. Thank-you.
Rosa
Posted 11/8/2012 1:45 AM (GMT 0)
Rosa, I posted to you on your other thread. You have a huge advantage, having a clean and sober b.f. He's right: It's not your life to live (or mess up.) Hospice is not involved in keeping people sober. It's primarily a help to the family, as well as giving "comfort measures" to the patient when things get really bad. Since your son has moved out of state, he would probably have to get someone locally where he is to refer him again to hospice.

Hugs,
Connie
Posted 11/8/2012 4:55 AM (GMT 0)
Angie, Its funny (not really funny)  but strange that you would mention having more of your love letters to go back on and read.  When I met my husband he was locked up in state prison and we wrote letters every day to each other, sometimes two. He was locked up for 3 years.  We both have our "boxes" of letters in our closet and I can't tell you how many times in our moves I've thought about getting rid of them but something has always stopped me.  That was 28 years ago, Well, I now know why I've never gotten rid of them,  there will come a day when I will need those letters to help me get through the days.  Its strange how life throws "stuff" at you, I thought by the time I was 65 I would not have to work, be able to do things that I never had time to do before but noooo...I work, take care of Chuck, make sure he takes his meds, set his appointments, take care of his 89 year old mom, etc, etc, etc. And know that this is just a progression to a bad end.  It would be such a wonderful thing to be able to lean on somebody for moral support instead of everything and I mean everything leaning on me.  Well, I guess I'ved griped enough, time to go to bed to do it all over again tomorrow, take care, Pat
Posted 11/10/2012 1:13 AM (GMT 0)
Hi Pat,
Wow, sounds like you really have your hands full, too. I can't believe you work and take care of both of them. Oh my Gosh. Can't imagine doing this for two folks and working. Yes, the idea of having someone to lean on evey now and then sounds wonderful.

One of the hardest things for me is knowing that...like you said...this is just a progression to a bad end. My husband finally called his Doc yesterday and asked to get hooked up with Hopice, so they will be coming out next week to evaluate him.

Hopefully, they can help us through, we are having a difficult time dealing with the waiting....waiting...waiting. We don't really know how to have a relationship that has no future. We both want to distance ourselves so we are prepared emotionally. We thought we were there in the nursing home, and then he came home, doing better physically,,,anyway until last couple days,,,,but emotionally we are both angry and feel trapped in a downward spiral that won't end anytime soon.

Well, like you said enough griping for now. I do admire you for doing all you do, sounds twice as hard as what I am doing. So much for our "Golden Years", huh?
Angie1953
Posted 11/10/2012 1:19 AM (GMT 0)
Rosa,
You sound so devastated by the choices he is making. I know it is so hard not to be angry at them. (I am angry a lot.) I am thinking about you tonight. I also can relate with what you are going through, even though my hubby doesn't drink, I am angry that he choose to not even try and get a transplant...that he will just die instead...and that I am ALONG FOR THE RIDE. :(

Am going to have a cup of tea and try to calm down. I am all hyper and p------ed off about the whole situation.
Later...I'm trying to "Chill".
Angie1953
Posted 11/10/2012 3:17 AM (GMT 0)
Angie, my situation doesn't sound near as bad as yours, we are not near considering hospice yet.  As of yet, we still have a year before Chuck gets Medicare but I just have a feeling that when the time comes to do transplant evaluation that he is going  to refuse.  I've lived with him for almost 28 years and I know whats going on in his head.  Knowing this....I mentally plan out what I will need to do when that time comes, will probably go to my sister in New York, will not live with any of my kids.  Don't know what I am going to do with mom, will not be able to afford to care for her.  Reading this, it makes me sound very cold and calculating.  My life is so full of sadness now, never thought in a million years that it would end this way.............
Posted 11/10/2012 4:29 AM (GMT 0)
Hi Angie,
These thoughts helped me get through 4 years of ESLD: One day at a time and one step in front of the other. That's all any of us can do...

Roxie,
Would Chuck be willing to speak to someone who had a transplant? My email is on here.
Posted 11/10/2012 5:26 AM (GMT 0)
David, I don't know, he is not computer literite(sp?) 
Posted 11/10/2012 1:36 PM (GMT 0)
Angie,

I am relieved for you that you have hospice coming out to evaluate. They were a tremendous help to me emotionally. To be able to talk honestly with people who really do seem to understand end of life and all of the mixed feelings it brings.

It was a huge hurdle for my husband but once he was there, things really did get a little better for us. His pain was finally under control and all of the false hope sort of worked itself out of our systems. I was really blessed that he was able to still show his love for me and did not suffer with the HE that so many of you are dealing with. I was probably the one that was angry and irrational most of the time. I don't know how you and Carol get through it to be honest. 

The counselor from hospice lifted a lot of burdens from me and I hope they can do the same for you.

With tender thoughts, and prayers,
Marie

Post Edited (Mariel52) : 11/19/2012 1:35:27 PM (GMT-7)

Posted 11/12/2012 5:48 PM (GMT 0)
Hi everyone my name is Mehran and my dad is battling with ESLD right now. I'm 30 and my dad is 63. He was diagnosed with Cirrhosis caused by Sarcoidosis in 2007. At that time he only had varisces and had to get them banded every couple of months. about 7 or 8 months ago he started developing ascites which got worse and worse and now he gets drained every week. We have rushed him to the ER 5 times due to his high ammonia levels (HE), 3 of which happened in the last 5 weeks. He has lost so much muscle mass and is very thin and weak right now. He is also diabetic.

At first I was worried about his malnutrition and wanted him to eat more protein. This lead to the first HE episode. He was prescribed rifaximin only and that worked for a while but eventually he ended up back in the hospital. Now he is taking lactulose and rifaximin together. 30mL + 1 pill (morning and night). And now try and keep him on a vegetable/grain only protein source diet (he was eating red meat before even though I told him not to!) Things were going well with that for a week but then he was hospitalized 3 days ago because his sodium levels were low (119). Probably this is because of the laxatives and My dad hasn't been really eating sodium at all because we were told to limit it to prevent ascites as much as we could. Now we are being told to give him 2g of sodium a day and hopefully this helps. This is a nutritional balancing act and it has been rough.

We are working to get him on the transplant list. We have Kaiser insurance and we went through all the tests for the Kaiser transplant board to approve his case. But here in los angeles UCLA will be doing the surgery and have their own process. We have only 3 more appointments to goto for them to have all the information they need to make their final decision(which I have been told they approve 90% of what kaiser approves because they work so closely together). We have missed these 3 appointments 2 times already due to high ammonia episodes :( Now the next time we can get an appointment won't be for atleast 2 weeks out. I am praying we can just get these done and get him on the list. It's always on my mind.

When Kaiser approved his case about a month ago his MELD was 18. He also has a single liver tumor that is 3.5mm and we have to do treatment to keep it under 5mm for some criteria for the transplant. UCLA told me that in los angeles people don't get liver offers until their MELD is 30+. She said high 20's(does this mean 26-29?) for patients with tumors that can file a tumor exception.

There so much more I want to type about what is going on but I just wanted to get some of this out and on here to people that actually understand what we're going through. My mom and I take care of my dad. I don't live here at home but I'm going to be staying here starting next week to take care of my dad while my mom is not here (i work graveyard and she doesn't). I love my dad so much and it's been real hard for me to see a man that was always big and strong and so witty and cool become so weak, frail, and confused. He is a fighter and I know he is doing the best he can.

I'm so glad I found this forum
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