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Comment by Ramona on February 17, 2011 at 11:39am

Hi Janine!  Welcome!  I have been wanting to get familiar with yoga, now that my hubby is on the mend, we might look into finding a place nearby.  I also believe in the power of meditation, though I don't practice it nearly as much as I should... 

 

Best wishes for you, and your brothers! 

Comment by Janine on February 17, 2011 at 11:35am

Hi all, This is all new for me. I had to take over caregiver duties for my brother after he and his wife had problems. So now, it's me and my other brother. 

 

What I'm not new to is Yoga and meditation and I've found that meditating a few times for a short period each day helps with the stress.  Hope this helps people.

Comment by Ramona on January 28, 2011 at 9:28am

One more note - people keep saying to me "I don't know how you do it".  Well, you just do.  One day at a time, sometimes one moment at a time.  No matter how alone you feel - you are never really alone.  The support from the people around you at the living quarters will be a great help to you.  Best wishes...

Comment by Jan S on January 28, 2011 at 9:08am

Mike. I am sorry to hear about your wife getting worse. And I do understand how you feel. A year ago I was in the same situation - and even the same place. Even though it didn't end the way I was hoping for - I have nothing but good things to say about Mayo in Jax. They did everything they could, but infections made a 2nd transplant impossible.

As tired as you get - you have to try to stay optimistic, and support your wife the best you can. And if anyone understands how hard it is for you, it is your wife. I was there - but as the situation got more critical, I found strength.

I wish you and your wife the best - and being in Jax, at the Mayo I know she will get the best care possible. And I know you will get support from the people there - they are great (in my opinion).

Comment by Ramona on January 28, 2011 at 8:34am

Mike - hang in there.  My husband just received his 2nd liver transplant (though a 22 year gap is considerably longer than only 2) - and this entire past year leading up to the surgery is the most difficult I've had to endure.  His liver had gone so far that the kidneys were effected as well.  There is hope.  I totally understand the feelings of exhaustion and mental/spiritual collapse.  Try to maintain faith - for you, your wife, and your cat.  You will all 3 be in our prayers.

Comment by Pat Fuller on July 20, 2010 at 3:25pm

I think all of you did your best to help and support Maxene. She was looking for an excuse to leave and seemed to want members to tell her she should. When she didn't get that, she got mad at the group. Too bad. She could have learned a lot from what others have been through.

Comment by Ramona on July 20, 2010 at 2:31pm

Wow, Maxene - I find it sad you feel that way. All I see here is support, not you being chastized. We are supporting you and trying to help you see that the outcome may not be perfect, that you do love him, that we have all been there - I still am. I do EVERYTHING at my house and work 50 hrs a week. I am at my wits end frequently too. No one here has a holier than thou attitude in my eyes...I wish you well - whatever decisions you make...you do have to take care of yourself first and foremost - or you won't be able to take care of anyone else.

Best wishes for a long and healthy life.

Comment by Jan S on July 20, 2010 at 11:46am

Maxene - I know what you are going thru, and it is hard. I did EVERYTHING in this household for 5 years - I drove 150 miles daily to see her at the hospital for 6 months and I worked 60 hours per week. It will take every bit of energy you have, but in the end you care about him - that is why you can even do it. But with the outcome of my situation - I can look back and see what a big difference I made in her life (and she did tell me how much she appreciated it). I am proud of what I did for her (and to be honest - if I could go back 10 years, I would do the same all over again). Once she became so ill that she needed me 24/7 - she became my life, and now I am struggeling to find the meaning why she went thru all this "crap", and try to get back to what others consider a normal life (whatever that is).
To me it sounds like he has become what I usually refer to as a professional patient - been there, done that. It is horrible - but my wife snapped out of it eventually, and got back to her optimistic and hard working self.
Could also be that you need to talk to the doctors about the medication and side effects.
My advise - try to find someone that can help you out for a few hours every week, so you can get time to do other things. Things will work out in the end, and please don't let this behaviour get in the way of the love and care... you know the song "If tomorrow never comes".

Comment by Wendy Johnson-Askew on July 20, 2010 at 8:36am

Thanks so much for your warm comments. It is so hard. I do not know this man. He was always so kind and caring and now he is mean and hurtful. I know it is the meds and not him but I need a break. We have only been married 2 years and this is very stressful. It is nice to know I am not alone. I am very thankful for this site.

Comment by Flo Berry on July 19, 2010 at 8:54pm

Wendy- welcome to our group. I hope you find some useful information here and also make some friends - I know I have.
About the Prednisone - I've been fortunate that my husband (liver tp-10/07) hasn't had to take prednisone for more than a few months at a time. I learned that his mood would change drastically - it was very difficult to deal with at times. It would bring me to tears but it seems that it would pass.
We did however, talk to a friend who had her liver tp about 6 months before my husband did. She was sick for years before her tp so she had been on prednisone prior to her tp and is still on them now. She told us that she has adapted and learned how to handle the ups and downs. She's learned to recognize the moodiness but really has to work at holding back the temper and outbursts. It's not something that can always be handled and it is just the meds talking. I know from the caregiver standpoint - you feel like you've already got a full plate - overflowing many times - so how can you deal with this? You feel like you're being treated terribly and feel like they are so ungrateful for everything you've done and are doing. It hurts - yes it does! But please keep in mind - it is a side effect of the meds. Find patience from deep down, enjoy the good times with him and appreciate his life. If you can, talk to him during a good time and explain how you feel when it's happening - maybe he'll be more aware and can help you help him get through it.
Hang in there - take care and keep us posted on how things are going.

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