Caregivers Caring Thread-Renewed=#5

thank you emma and elle.
you also go through it too. its very hard to have children involved in this, especially as there is no certainty. they have to go with the ups and downs as we do. so sad.
xxnatasha.xx

hi natasha,

things with me are crazy and good. youngest son went back to college on tuesday. before school starts he has to move (and find apart time job!). miss him at home, but it's nice to have less mess to clean up. worries though, because now he is in hurricane territory. it should miss his city, but big rain and maybe(?) floods.

my boss thrashed me on tuesday. so, I have been crabby. I think he over reacted to the situation, but what do you do? he's the boss, so I gotta take it.

best news is dougie came home from work yesterday and said he feels really good. as long as he keeps abstaining and feels good, I can deal with whatever poop life throws my way.

hope that you are hanging in there and getting boundaries/rules set for when your husband comes home while SIL goes on holiday. I hope that he is still not drinking...and can get his other health issues looked at and treated.

ditto---elle, sadwife---hope you are getting through okay. please post and let us know how you are doing when you can.

emma

Hi All!

Hope all of you are having a good week. I'm ok, just taking it one day at a time. Hospice nurse comes every Wed. She said yesterday he was about the same as last week so no real big news. His vision is getting blurry and the belly is coming back. From last week to this week he gained 3 inches. The only really good news I can share is that the Ativan is a God send! I actually get to sleep at night (unless) he wakes up and has to pee. So that part is better.

Had one thing on my mind though I've been meaning to ask all of you...I know the hospice nurse(2 of them) have given me their prognosis. One said 4-6 weeks and the other said she thinks more like 8. In your past experience with Hospice are they usually pretty accurate with their prognosis? I know they see it all the time so I'm sure they follow the steps that occur but I was just wondering. His son is coming home on Sept 1st to see him (he lives in Ohio), and when I told the nurse that she kind of raised her eyebrows...made me wonder.

Anyway, I read along and keep up with all of you but don't always have free time to log on but I do keep up. You all have some tough situations as well and I feel for you too! Remember to take care of you!

 

Yea Connie, we already have that as well as the hospital bed, wheelchair and walker. They also brought in the O2 and the suction machine. His mind is still sharp but at the same time he seems out of it. He has looked at it all and doesn't even ask what it's for etc... He either knows and doesn't want to talk about it, or he doesn't know and doesn't care. It's hard to tell. He ran a temp the other night of 99.5 for no reason. Little things different I've noticed. Thanks for the input...somedays I feel like I'm the one in a daze....

bump

I agree with what Natasha said...I hope that all who have lost their loved ones are coping the best they can and that their grief stretches thin and lighter as Natasha described in the grief thread.

Emma

Hello, all!!

I have not been posting much, but I do check in (or at least try to) daily to see how you are all doing. There has been so much loss this last couple of weeks, I am praying for each and every one of you!

It seems for me that once school started back, life got really crazy again...but sometimes that's a good thing as it takes my attention away from this disease. We have a 7 year old who started 2nd grade this year. He's such an awesome kid in the midst of all this. He does not know daddy "healthy" because my husband was diagnosed after getting really ill when my son was only 4 weeks. So, he's used to all the hospital trips, etc. I also go to school full time, too! Nice distraction, though.

My hubby seems to sleep more and more....although the last bloodwork he had done did not indicate his liver functions any worse than normal. He's never had ascites, etc. He had an endoscopy/colonoscopy recently and they took some biopsies of some suspicious looking spots, so we are waiting on the results of that. I the meantime, we see the hepatologist on the 15th and they will do bloodwork and also he's scheduled for a GAD MRI of the liver and abdomen that same day.

Hope you are all finding some time for yourselves....you need the break! I usually go to lunch with friends on Fridays and that is a great stress reliever for me......

Mer

hey mer, glad you are keeping busy, you seem quite positive at the moment, thats good when that happens, you feel you can take it all and then some!! hope hubbys results are not too dire. prayers for you all. these kiddies involved in this mess of a disease are real troopers arent they, amazing little things.xx
mr E,,, hubby going downhill very slowly but i have a sneaky suspicion he may be drinking. im almost ashamed to type those words. i will find out for sure next week as sis in law is going away and he home with us for a while. the last few times ive seen him hes moody and vicious one minute then father of the year the next. not sure if its h.e. drink, or what. as i say im in for a real treat next week so i shall let you know!!
xxnatasha.xx

Natasha, when he's staying with you, you should be able to smell it on him or tell by his behavior if he's drinking.  Alcoholics are very good at hiding their booze, so check in the back of closets and cupboards, under the sofa and cushions, under the bed, and even in the toilet tank.  Don't get compulsive about it, but if you suspect that he's drinking you might be able to bust him with "evidence."  Is he driving these days?

Hugs,

Connie

Natasha, if you haven't already done so, you need to let the children know that their dad is very ill and that when he says or does mean things it is because of the illness and it is NOT them or anything they've done.  If they ask if he is going to die, just tell them that he won't if he does what the doctor tells him and takes good care of himself.  Try to separate them from his presence if he gets really bad.  You also need to take breaks yourself.  It's a difficult position to be in, but just remember to focus on protecting your children and yourself.

Hugs,

Connie

Natasha - I am somewhat new to this forum, but want to send you some good energy and hope that the visit goes well for you and the children.  I so admire you for coping with this illness and with 3 little children!  I really can't imagine being able to do so, even if my hubby were staying with others.  So many on this forum have little children and I try to imagine what that would be like and can't.  We are older, me 58 and hubby 65 and his ESLD has only become debilititaing for him in Feb of this year, and I am still exhausted.  This caretaking job is beyond anything I have done before in the way of stress.  Please do not feel bad that father of kids have been with SIL, that sounds like the best.  Also, when you noted that you felt like a fraud being on the caretaker thread, I found myself shaking my head, going, Oh no...you certainly are not a fraud and I want to hear from you and how you are managing.  It's also a bright spot to read about your children and what they are up to and how they are doing.

  My caretaking has also envolved taking over my husband's job on our ranch, which is caring for 28 horses (10 of them miniatures), a donkey, 4 chickens, a duck, 7 cats, a bunny and a Corgi. (We have a kid's petting zoo during the summer, and during the winter I take the animals to preschools or nursing homes for visits.)  They are a chore, but such a refreshing distraction (most of the time).

  Will be thinking of you and your family and will light a candle we call the Goodtime Candle, sending good time wishes your way for the visit.

Angie1953

 

Angie, you are a wonderful addition to this forum.  Lovely post.

Natasha, many of those who recently lost loved ones have been in the position of caregiving and have been through what you are going through, whether with children or not.  You have a right to post your feelings and concerns whenever you like.  I'm wondering what your eldest child is confused about.

Hugs,

Connie