In the Hospital again....
My mom is again in the hospital with Pneumonia. Thursday evening, I took her dinner. She was sooooo confused and disoriented, she tried to eat a napkin (very funny in retrospect, but it really scared me at the time). She thought it was a chicken nugget.
The nurse took her temp and I kept telling her something was wrong with my mom and she kept chalking it up to "well, she's a dialysis pateint and sometimes that can really take it out of them. Your mom does very well with the lengeth of time she's been on dialysis"...Well about 11:45pm on Thursday night, I got the call they were sending her to the E.R.
When she got there, she was better then she had been earlier in the evening - alert enough to be mad at me for agreeing to send her to the hospital.
I also finally talked her into letting the doctors run a full Lupus panel of tests so we could see what it's doing. She has been refusing for the past few years - like a second denial or something. I haven't really pushed it too much. At this point, I don't think she's well enough to go through a treatment. But it might help to explain some of what's going on with her and what we can expect. It's sort of like groping around in the dark at the moment.
I never expected her to be like this. She's had this awful disease my whole life and I just never in a million years, would've thought that it would be able to knock her down so much.
Periodically, I talk with her and see if she wants to keep going to dialysis. We had talked about it when she first started going and how if things got too bad, that she could just stop going and decide when she dies. So far, she's taken everything in such stride and not let anything get her down. the last time we had that talk was about 4 years ago I think. It's completely her decision, but I wanted her to know that I would understand and support her no matter what she wanted to do, then or in the future. I guess I haven't had the talk with her in a while, because I'm afraid she will say she wants to stop the dialysis....and no matter how long I have with her, it will never be long enough. She's only 60 friggin years old, and she lives in a nursing home. It makes me so angry!
:cry: I'm so very sorry, Koko. My own dear mom is in her eighties, still vital and wonderful, and just picturing how I'd be feeling if I were in your shoes makes me cry for her...and for you. I believe God has a purpose in everything, but it's sure darn hard for us to see it sometimes. Justbe very, very good to yourself right now. You sure deserve it. Love, Kathy
Is she a candidate for a transplant? Or do her other health problems mean it's not an option? I am so sorry she is having such a difficult time - it must be so hard without other family to share the burden. It's a helpless feeling when you want to do something, but there's nothing you can do. My mom went through a long lingering illness, and it's hard to watch someone go through that. But whatever choice she makes, I'm sure she is grateful for your love and support.
Thank you ladies.
She is not a candidate for a transplant. She is too sick and too weak for one. And it is my understanding that with Lupus, they won't do transplants (I could be misinformed here though) because the Lupus will attack the new kidney. They would rather have the kidneys go to those who would be healthy with a new kidney. Also, her age is a factor.
They told us a long time ago that her Lupus was in her central nervous system and from there it could attack anything it wanted to from her brain, to her spine, to her heart....and I'm wondering if it's doing just that. She gets so confused sometimes....and with everything, I think that is the hardest thing to see. My mom is so smart....and seeing her try to eat a napkin broke my heart.
A heart doctor came in to see her yesterday. She told me he said something about doing some tests, so I'm not sure yet what's up there. I'm going to try to call her primary care doctor today and see what I can find out. Still no rhumetory consult though - grrrrrr.
If she is more lucid in the morning and seems to get more disoriented and confused in the late afternoon and evening, she may be experiecing "sundown syndrome" or "sundowning". If so, you need to talk to the OT therapist and the care facility and make them aware of this, because there are some changes that could be made to her schedule that might help a little. Enouraging her to nap in the afternoon, making sure her room is well lit in the late afternoon and evening to reduce low lighting and shadows that can cause disorientation, keeping a radio or music on low to reduce agitation, and other things to help her stay more alert and aware. Sundowning is very common in early-stage Alzheimers and other neurological disorders, but it can easily be missed in a care facility where there is a lot of confusion in late afternoon with shift changes, meds, meals, etc. And that type pf hustle can make someone who is sundowning become even more disoriented.
Is your mom under the care of a neurologist? If so, he needs to be made aware of the changes in her behavior. She may need a CT scan or MRI to check for a small stroke or blood clot. And you may want to check with the nurses and staff at the care facility to make sure your mom is drinking enough fluids - even slight dehydration in an older or frail person can cause marked disorientation and personality changes. So can many medications which are often prescribed inappropriately for older patients, like certain sleeping pills. A low grade urinary tract infection can also cause disorientation and confusion in a frail patient. So there are a lot of factors that could be contributing to her mental status, and you want to make sure the doctors have ruled all of them out before they attribute her problems all to lupus. Sometimes doctors have a tendency to blame a new or different symptom on lupus without taking the time to look for other possible causes, so you may have to press them to look beyond the lupus to make sure something simple like a UTI isn't being missed.
You and your mom will both be in my prayers - just wish there was something more we could do.
We actually have an appointment with a neurologist next month to try and figure out why she has tremors.
Her confusion doesn't seem to a constant thing with the time of day, it's when she gets a fever for any reason. And she can be fine one minute and the next minute she's very sick. Mostly they seem to chalk a lot of things up to being on dialysis more then her Lupus.
She calls me her bull dog though. When something is wrong I'm relentless and if there's something that I think should be getting done that isn't, then I speak up. I'm pretty easy going until something is wrong. I don't pick at the small things, but if there is truly a problem, they know about it!
I did notice last night that there was something odd going on with her. She never lays flat on her back. She hates it...and she hates being in bed, so when she is in the hospital, she sits up as much as possible (hospitals don't have hoyer lifts, so she can't get out of bed at all). Last night she laid herself flat in bed and she wanted to turn on her side...but not the side she always lays on, the other side.
I told the nurse it was very odd. She was also calling out for the nurse last night, which also isn't like her. I'm wondering if there is something else going on. She doesn't produce urine, but I am wondering if she's got a UTI as well as the pneumonia.
I kept asking her if she was alright and she said yes, but she just wasn't herself yesterday.
Does she have a shunt for the dialysis? They are very prone to get infected, especially in someone whose immune system is not functioning well. So the nurses need to be checking it frequently for signs of infection - her shunt may need to be replaced or revised.
Her wanting to turn onto her side suggests she might be having some bowel or abdominal problems - sometimes with diverticulitis or or other intestinal problems, people tend to curl onto one side to try to relieve the pain. So you might ask her caregivers if she has been having regular BMs and if there seem to be any problems with her digestion.
I'm very glad she is going to be seeing a neuro soon - hopefully he will have some answers for you,
We saw her nephrologist tonight and he said that the pneumonia doesn't seem to be getting any smaller in her lung. So tomorrow, she will have a cat scan so they try to figure out what it is.
She seemed to be much better tonight. More lucid and not so sleepy. More fiesty and just more of herself. I was relieved to see that.
They check her dialysis shunt regularly and they say it's in very good condition and working beautifully. It looks so awful though, the way it's all swelled up from all the pokes it gets. She's got like 2 mountains on her arm where they plug in all the time. I guess it's because of scar tissue that builds up or something. I've never really asked about it. They say that her surgeon did a really good job of building it though.
It's just so frustrating and I'm so tired. Maybe things will look better in the morning.
She's still in the hospital and last night spiked a fever of 101 again.
I hate seeing her like this. She's just so out of it and so much like a child in so many ways.
I keep asking questions and I don't seem to get too many answers.
I'm sorry she continues to have so many problems. Even a low grade fever in an older or frail person can cause a lot of disorientation, so this probably isn't helping her mental status any. Has she been seen by a rheumatologist yet?