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Caregiver's Sharing Thread II

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Posted 10/24/2010 3:48 AM (GMT 0)
Boomer5 finally someone who can understand what I feel at times. My mom and me are actually doing good now but I still would like to have my space back and not hear about body functions 24/7. I remember having a break each day between jobs now it 24/7. It's just hard being a caregiver around the clock. Anyway Mom's doing good labs are good I do understand labs are not the only thing she does have weak days. Sometimes I wonder if she is really sick. She is still getting around and doing her knitting and books mostly tv. She seems happy most days I think she gets lonely on the days I work even with the others checking on her. Does everyone have a confusion at the end. I dont think mom is that confused even with her three year sentence. It seem so bad when I first heard about it I have always seen the end results now I am seeing the whole story and still wonder how long and what will happen next. Will it be like something I have read or what. I agree with everyone that has said its an emotional disease as well as a physical. 

Post Edited (pug5) : 10/23/2010 10:02:27 PM (GMT-6)

Posted 10/24/2010 4:16 AM (GMT 0)
At times you feel bad that you would think any such negitive thoughts. We are caregivers by trade but we really should have realized we can't do this around the clock and we really do need to take care of our self to due to the emotional parts. Mom and me have learned alot due to this time we have had so I do like that part. I have learned things I wouldn't have any other way but her staying with me. And she does get a little silly at times when she gets tired and has routine she does every night and gets fussy if you mess with it. She is a cute old girl.
Posted 10/24/2010 4:56 AM (GMT 0)
Pug, she may do quite well for several years or more and then suddenly take a nosedive. Nobody can say for sure. Just be glad that things are going rather smoothly right now. It sounds like you may need to find a way to have more "me" time. It's very difficult to go straight home from work and have to do your caregiving job. If you could find someone to stay with her for an hour or so once or twice a week while you meet with friends or go to the library or take a walk..just anything to give yourself that bit of a break...it would do wonders for you.

Hugs,
Connie
Posted 10/24/2010 12:16 PM (GMT 0)
Mike went very quickly... and given symptoms he had had in the past... it was a blessing.. he was completely independent.. it was his bp crashing... also Mike had an ammonia level of 208 and was silly.. not beligerent... I didn't know a thing it was kinda like when he was drunk.. but he was very happy... and silly...not mean like he had been before he had the tips done... anyways if that helps.. everyone is different.. Sandi

Posted 10/24/2010 2:43 PM (GMT 0)
I'm interested in the fact that after the TIPS procedure your Mike was silly with high ammonia but not mean.  Right now I have alternating melancholy and mean.  I think the mean is when the ammonia is high. He has had swinging ammonia levels...114 one week, 67 the next and then 17 in hospital.  Now that he is home, it is heading toward mean again. 

My hubby was doing pretty well, though still drinking, when we had our latest crisis.  He had a bleeding episode that resolved quickly, then his edema got really bad and he was admitted to hospital with peritonitis.  He has rebounded after 5 days on IV antibiotics, but now at home on oral antibiotics he seems to be going down hill again in the altered mental state department.

We have an appointment with a specialist this week.  And maybe that procedure is next.  I want to look up a lot about it today.

Thanks for posting. yeah

Mama Lama

Posted 10/24/2010 4:05 PM (GMT 0)

ML, I was rechecking your posts before I repllied about your husbands mean moods. It must be very difficult for you to deal with along with his illness, a part of the mood swings is not just amonia levels. I worked in a drug and alcohol treatment center for a number of years and this is also not uncommon for some people new in recovery. Emotionally he is dealing with new sobriety, major health issues and this can be putting him on a roller coaster of emotions. If he is getting help from a counselor maybe you get him to bring it up to them, he may need some extra tools to help him. My Doug could get very short with me sometimes but mostly he would just get bizare with his behaviors when ammonia went up. Had to alarm the door at night with a portable alarm as he liked the outdoors at night, problem with that is he would be naked and take knobs off stove so he wouldnt cook. The testiness his counselor said was a reaction to fear of death and the unknown, frustration with loss of independance and the knowing he caused this to himself and us. I do hope this helps in some small way.

Sue

Posted 10/24/2010 4:49 PM (GMT 0)
My husband had the TIPS procedure approximately 2 years ago due to increased risk of bleeding from portal hypertension. Since we were already dealing with encephalopathy I was very afraid for him to have the procedure since there is an increased risk of encephalopathy after the procedure. The encephalopathy episodes haven't increased for him. For that I am very thankful. He was hospitalized a couple months ago due to high ammonia levels, but since then we have been able to keep the encephalopathy in check. He has been doing very well which I give credit to God and all the prayers from everyone. I also thank everyone on this forum for all the knowledge they have given me to deal with this disease.

My prayers are always with you all.
Posted 10/24/2010 6:50 PM (GMT 0)
hi everyone i am now home from seeing dad in the hospital,he was drifting in an out of sleep.The doctors told us his body is shutting down now he has failure of other vital organs,an kidneys involved.They cant stabilise his low blood pressure,an we have to prepare for the next 48 hours.Mum is distraught of cource,an my sister.I have to be strong,its awfull seeing him like this as anyone who has been through this will know.I have noticed his pupils are very big?so if anyone has a reason for this tell me,i want to know everything.I find myself not wanting to miss a second of his breathing or if he speaks to us.The ward is busy lots of visitors patients shouting out ,it is all too sad,to see my big strong determined dad in that state. I am so tired tonight but must be alert for a phone call from the hospital,i am frightened to be away from him in case,he needs us.What a situation to face if he passes in the night an we are not there.We cant stay at mums tonight as we have comitments to our son,i cant do anything else. i am sorry for rambling,i wish each an everyone of you well an i will update. sad spooky
Posted 10/24/2010 7:18 PM (GMT 0)
spooky, i am praying for you and your family. continue to be strong and care for yourself so you can be there for everyone.

emma
Posted 10/24/2010 7:57 PM (GMT 0)
Spooky, You and your family are in my prayers.
Posted 10/25/2010 5:07 AM (GMT 0)
I get the feeling somehow that I am not saying the right thing on this site. I believe I am being judged. I just can't seem to say the right things. I am not good at expressing my feelings right by writing on this. Sorry hope you guys do well and take care. I will check back now and again.
Posted 10/25/2010 12:13 PM (GMT 0)
Mama... Mike had a relapse... and that hastened his ESLD symptoms... and he developed liver cancer... however... why he was silly and not mean with high ammonia levels after the TIPS is beyond me...his level was 208...and he was as goofy as can be... which is why I was taken off guard... cuz he could be that way cuz of an excellent sense of humor...I felt guilty cuz I didn't realize it... he had the Lactulose... and did not take it as he should have cuz he didn't like the effects... Sandi
Posted 10/25/2010 5:05 PM (GMT 0)

Pug, I don't understand.  You express yourself well.  Are you upset that nobody responded to your last post?  To me, it seemed like you have a good handle on the situation and therefore there was nothing to say.  I think a lot of us are focused on other members right now who are struggling...but every single member here is important to the forum.  So please don't go!

Hugs,

Connie

Posted 10/25/2010 7:05 PM (GMT 0)
Pug, I'm am so sorry that you are feeling the way you are. There are just some many members here now that it is hard to keep up with everyone. I care about each and everyone here, even though I haven't been posting alot. Everyone here is on my mind and in my prayers.

Your experience and opinions are greatly needed here. I hope you reconsider.
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