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Posted 7/23/2010 7:02 PM (GMT 0)
I think I have posted here before, but it hasn't been for a year or so. about four years ago, my mother (now 80) was diagnosed with cirrhosis after an episode of esophagal bleeding. We almost lost her, but after she came home from the hospital she seemed almost her old self and did really well for three years. Then in March of 2009, she had a long spell of flu-like sickness, and she has been going slowly downhill ever since. She spent five weeks in hospital last fall after developing pulmonary edema and ascites, but they were able to bring that under control with diet and water pills and she came home again. This year, her mobility has been declining steadily and she is now back in hospital after her knees gave out on her and she couldn't walk anymore. She has been in hospital 2 1/2 weeks now, and we are having to arrnage to move her to a nursing home because she can no longer cope at home with only my 85-year-old father to care for her. She has lost weight at an alarming rate over the past year. Her arms and legs are like sticks. The ascites has come back, although it's not unmanageable.

I'm wondering if she'll even live long enough to make it to the nursing home. She's hardly eating anything in the hospital, says she feels sick most of the time, and mostly just wants to stay in bed and sleep. She has up and down days -- yesterday she was quite good. She was up in her wheelchair and quite chatty and cheerful. Today, she's flat on her back in bed, hasn't eaten anything, and didn't even want me to stay and visit with her. When they checked her liver levels a couple of weeks ago, they didn't find anything alarming, so the only medication they are giving her is water pills.

This is such an emotional roller coaster for our family. One day we think she's improving and turning around; the next day she seems on the verge of death. No one can give us any answers about how long she might have. It's almost impossible to get to talk to a doctor and then they act very evasive. The fact that they aren't considering palliative care seems to indicate that they think she has some more time, but these feelings of tiredness and sickness are worrying us.  She wasn't like that before her fall -- she occasionally had days when she was feeling off color, but got up and got dressed every day, was eating well and enjoying her meals. This sickness and extreme fatigue has only started since she went into hospital.

I'm feeling so worn out. There are days I almost just wish it was all over, so that I could be free of all this anxiety and worry.

Thanks for letting me vent.

Posted 7/23/2010 9:06 PM (GMT 0)

Hi, Amberlight.  It's been a little over two years since you posted here.  I'm sorry to hear of your mother's decline.  She is probably sick and tired of being sick and tired, and given her age she is probably just giving up.  There's likely little that can be done, anyway.  If she wants to sleep or stay in bed, that's her right.

We can't tell you how long she has left.  She may make it to a NH or she may not.  If she does, I recommend that Hospice be called in.   I can tell you is that it is very important for you to take care of yourself.  I don't know how often you are going to see her in the hospital, but you might want to shorten the number of times you see her in a week or shorten your visits.  You can call the nursing station to inquire about her when you don't see her.  I know that her illness has been going on for a long time and you are no doubt exhausted.

Hugs,

Connie

Posted 7/23/2010 9:27 PM (GMT 0)
Hi Amber and welcome back. It has been a while since your last post.

Doctors, really don't like to give definite time lines. And yes sometimes it is very hard to meet with them. Ask the nursing staff what time her doctor usually does his rounds. They should know. Try to be there when he does them. Be direct and firm that you'd like some answers to your questions. I did it with my husband and brother both. Their nurses knew the time when the doctors usually showed up.
You you say the doctors aren't considering palliative care.....was it discussed at all? What is your mom saying? Is she ready to let go? If so I'd ask the doctor if it's time to call hospice.

It's been a long roller coaster ride for you. I understand your feelings of tiredness. Have you gotten a little of Me time lately? It's essential that you give yourself some me time or you will surely burn out.

Take care.......thoughts and prayers........
Posted 7/24/2010 11:21 PM (GMT 0)
Thanks for your posts. Mom says she isn't giving up, and seems to think she's going to get better eventually, but it's been a long, slow, steady decline. I believe the doctor makes his rounds first thing in the morning -- like between 8 and 8:30. The trouble with hospital is that Mom isn't getting the individualized care she needs for her condition. Her meals are what everyone else is eating that day, for example, and sometimes they contain things she really shouldn't be eating. They are also giving her Tylenol 3 with codeine for her back pain (from osteoporosis), which I feel is really stupid considering the grim shape her liver is in. No wonder she's feeling nauseated. But... the nurses are all overworked and have very little time for anyone so I guess they're just doing what they think is best under the circumstances. At least at a nursing home she'll get individualized care...I just hope she lives long enough to get there. She was feeling better today, but very sleepy.
Posted 7/25/2010 2:10 AM (GMT 0)

Amber, the Tylenol #3 is probably also contributing to her sleepiness.  She'd be better off on Percocet.  Hope you get a chance to speak with her doctor.

Hugs,

Connie

Posted 7/28/2010 6:58 PM (GMT 0)
Mom has been excessively sleepy the last couple of afternoons, to the point where she can hardly keep her eyes open or be bothered to speak. She starts saying something, then drifts off again.

The nurses have been getting her dressed and up out of bed in the mornings (doctor's orders apparently) so I don't know if the extra activity is tiring her out, or if she's moving towards the end stages of HE.

I am half afraid that one day soon we are going to get a call to say she's gone into a coma and that they're moving her into palliative care. My big worry right now is how my dad will react...he thinks she's going to get better. He's 85 years old, and they've been married 55 years. He has no social life outside the immediate family. Losing Mom will kill him.

I'm just hoping right now that Mom will rally and go on for a little while longer. Other times I just wish it was all over with.

 

Posted 7/28/2010 7:42 PM (GMT 0)
Thanks for the update, Amber.  No doubt your dad is going to need a lot of emotional support in the days to come.  It's very possible that your mom will slip into a coma.  Her present state is probably a combination of the disease, extra activity, and medication.

 

Hugs,

Connie

 

Posted 7/28/2010 7:55 PM (GMT 0)
I'm not really sure how I'm going to be able to be much help to Dad when I'm barely keeping my own head above water...I'm afraid we're going to drag each other down into depression. The only time I feel better is when I'm not at home with him, as awful as that sounds.
Posted 7/28/2010 10:26 PM (GMT 0)
Perhaps you could look into some grief counseling for yourself.

Hugs,
Connie
Posted 7/28/2010 10:32 PM (GMT 0)
I don't know how you are doing all this... those feelings are "normal"... I dealt with the wanting it to be over and wanting Mike to stay... and the mental and physical exhaustion of trying to do it "all"....my prayers and thoughts are with you...
Posted 7/28/2010 10:42 PM (GMT 0)
i too know what that feels like. i too saw my mom waste away and it was hard to hold myself together. everyone looked to me to be the strong one, yet they fought my every decision and my cousin said i gave up on my mom. if i broke down then i was afraid i would look like a wimp and i am the one who was supposed to be strong. so i cried a few times under stress but when she passed away, i refused to go home and sleep until her funeral was arranged and we had something taken care of which took hours to do and i had had maybe two hours of sleep while my sister and uncle went home and went to sleep. i hate to admit it though but i was kind of relieved it was over(i am actually admitting this and feeling guilty) because she was suffering and i hated that. the women that walked and biked everywhere even with the hep c and cirrhosis, and was strong was suffering and she hated it. i dont doubt that my mom knows i did whats best but i hope everyone else feels that way too.
Posted 7/29/2010 1:21 PM (GMT 0)
Thanks for the encouragement. I am trying to carry on with life as usual, and find quite a bit of comfort and stability in my work, friends, Tai chi classses, pets, gardens, etc. As bad as this sounds, I am intending to cut back my visits to the hospital until/unless Mom improves a little -- first, because Mom really isn't up to visitors in any case (yesterday we weren't even there five minutes) and secondly because I hate seeing her like this and it just depresses and upsets me more than necessary.

Worriedgirl, I like the quote you have at the end of your post: "The only person you can make you happy is you." So true...I've learned the hard way over the past few years that if you depend on someone else for your happiness, you're in big trouble when/if something happens to that person. And I understand how you feel about being relieved when your mother was gone...it's very sad, but at the same time it means she's free of her broken-down body....and if there is no quality of life left, there's not a lot of point going on. I know that if I was in my mom's condition, I would prefer to die and get rid of my sick, tired old body.
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