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My Mom was just in the hospital for a low blood count 2-3 weeks ago, and prior to that she was having swelling of her legs and abdomen from low albumin (this is something that's been occurring for the past year off and on) in addition to a bunch of other stuff. The hospital gave her a medication to rid of the excess fluid (it wasn't Lasix, but something stronger that they told me is not to be used regularly as it's too hard on kidneys) and it worked, but now the fluid is back with a vengeance & Lasix is not helping. Her feet, legs, abdomen and hands are swollen and her legs "leak" fluid because it has nowhere else to go. The Dr. at the SNF doesn't seem to be in much of a hurry to do anything about it. Mom is extremely uncomfortable & "bloated" feeling for lack of a better word.

I talked to the nurse & expressed my concerns that this doesn't seem to be resolving. I asked if they were giving her protein supplements, and she said no - that they need an order for that. I then asked why Dr. F hasn't done so, & she shrugged her shoulders. She then told me that I should probably make an appointment for my Mom to see her primary physician for a 2nd opinion (which I took as her not being happy with the way Doctor F was treating her without saying so(?)).

As I was getting ready to leave the facility, I saw the Dr. down the hallway, so I asked him for a moment of his time. I told him I was concerned & asked him flat-out what he plans to do with my Mom & why he hasn't ordered protein supplements...or would those even help or ? He said "I'm just going to be honest here - your Mom's been failing for quite some time now, and I really don't know what else to do for her. Between the diabetes, rheumatoid arthritis, congestive heart failure and kidney disease, it seems like nothing we are doing is helping turn her around." So I asked him if protein supplements would help, and got an explanation about the cause of hypoalbuminemia and how inflammation & the liver plays a role (he thinks from the RA). He mentioned that he didn't think it would help, and then told me that in the condition she is in, she probably qualifies for hospice at this point. I was a little taken aback, but I asked if I can have her see her primary physician for a 2nd opinion, and he said "of course - if he has any tricks up his sleeve that we haven't thought of or done yet, I'd be happy to hear what they are."

I left feeling like i was sort of caught between a rock and a hard place. Protein supplements "might not" help, but it's not like they're super-expensive & it's worth a shot, right? I am a realist...I KNOW she has been sliding downhill for awhile now, and I KNOW she isn't going to do a 180 and be as "healthy" (for lack of a better word) as she was a couple of years ago. I don't believe in prolonging the inevitable for the sake of modern medicine and their statistics, but what do I tell my Mom? All I managed to say to her before I left is that Dr. F said they've run out of ideas on how to treat her & suggested that she see if Dr. Z has any ideas that they haven't thought of. She said "well I sure hope they figure something out - I am getting so tired of this... it's always something." I told her "well, Mom, considering what your body has been through all these years...." she cut me off and said "yeah, I know."

I am waiting for her primary to call me back - but what the hell do I say?? "Dr. F is ready to sign the hospice order...do you agree???" or ???? Worse yet is what do I say to my Mom if both Drs. agree she should be on hospice...or do we not tell her, or do they tell her?? Ugh. Need some advice here....

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That situation sounds like a nightmare! My daughter is the joy of my life, and I would die for her. To watch her be trapped in such a limited life would break my heart.

Your sons may just be insensitive jerks, but I suspect they are just trying to avoid the pain they feel about their sister. That's what I prefer to think, anyway.

There are several people here with young children who are disabled in various ways. There are others who have lost children to accidents and worse.

Do you have any friends or church community to reach out to? Many of us find that families may love us (or not), but sometimes they can't or won't be who we need.

Please "Ask a Question" so that others will listen to your story and offer you our love and support.
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It is hard to lose a parent, both of mine are long gone, but which of you is slowly
losing an adult child while you yourself are aged? My daughter is in a nursing home, paralyzed on one side from 2 strokes, can't get out of bed, or a geriatric chair, has had pretty good long-term memory but very confused as to the present. She is 65 and I am 89. It is so hard and I do not feel I receive any sympathy and/or
understanding from the rest of the family, which consists of my two sons, who do have their own significant problems. Is their any one out there who can give me some support?
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Well Mom attempted to transfer herself from the bed to the wheelchair this morning & fell. She called me to tell me about a new physical therapist she saw that she didn't like, she complained about the food (usual topic of conversation) and that she couldn't change the channel on the TV (dead remote) and then nonchalantly mentions she fell, and then tried to nove onto the next subject. I said "Wait...WHAT???" So she said she didn't hurt herself - she just had to wait on the floor for someone to come help her get back up. I cut the phone conversation short and told her I would call her right back. I immediately called her nurse, who told me she was just about to call me regarding the fall. She said she hit the back of her head on the bed and there was a little bump, but no bleeding or skin tears. The in-house dr saw her & told them to monitor her vitals for the day & alert him if anything changes, but so far all was normal. She told me she is worried that my mom is getting weaker and no matter what they do they can't get it through her head to NOT get up on her own, so they are going to have to alarm her bed. (my mother is one of the most stubborn people on the planet!) She has also been talking a lot about her sister that passed away about a year & a half ago - said she keeps thinking that she's going to come and visit, and then says "but then I remember she's dead...". (((sigh)))
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Hospice in a skilled nursing facility can be a help, or a mixed blessing - they can come in and get paid for a little extra one on one time, but sometimes not doing that much that the regular staff do not usually do. And I found out later that what it meant to the staff was that they would call the hospice people instead of the regular doctor for medication issues, and the person on call would not typically know that much about her. I'm not saying don't do it, but find out waht it will and won't entail exactly in your setting. Inpatient hospice, which is more for much closer to the end, though our facility here started offering a longer term residential program that was less costly than skilled nursing, and hospice services at home are usually a blessing all around though.
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Hi, I can't contribute to the discussion on the specific medical issues but I'd like to comment on the hospice issue. And the point of seeing another M.D. YES, I would have my mom see another M.D., especially if there is a physician that has seen her before. I find the doctors at facilities are often overworked and they don't always have enough history with the patient. Let's face it, you have nothing to lose. As far as hospice, I'd pursue that as well. I am a big believer in hospice and it isn't as scary as it sounds. None of the things that afflict your Mom have treatments to cure them, they only have methods to treat the symptoms. On hospice, those treatments would continue, as would the medicines and comfort treatments. If you check in to various hospice groups and determine what they offer, you can select one that is good for your Mom. Hospice can provide more personal service to your Mom, most offer several hours of a health aide up to 5 days a week. Nurses, social workers, spiritual leaders, etc will all be in touch with her. Isn't that a nice addition of help for her?
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Thanks for the answers. I forgot about the DVT in her leg...and the ulcers on her toes & legs...she's really a mess, to be honest. I just feel so helpless - and sad for her. When she lived here & I was her caregiver, everything was so tense & I was so stressed out that it took all I had to feel anything for my Mom but frustration & anger, let alone feel sympathy for her. Now that she's been at the SNF for a couple of months, that has turned around & I feel like a daughter again who just wants what is best for her (well, more so than before). I don't want to lose my Mom, but I also don't want to see her suffer ailment after ailment for years and years either. This is such a tough road to be on. We are scheduled to visit my husband's family out of state next week for a few days - I am hoping to get her into her primary physician before we leave...or maybe I should wait until we get back for that.
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Purple sushi, my heart goes out to you! My father is going through the Sam thing...just add Diabetes, aorta aneurysm, emphysema, Congestive Heart failure, kidney failure, blood clots in his legs (refuses surgery) and Dementia. Dad had chosen palliative care ; however the Dr. Was talking hospice, because he has so many life ending diseases. Dad has a DNR but still wants to be able to make decisions regarding his health care.
My mother had ALS, Lou Gherrigs Disease and did have hospice care. I believe my father will make the decision when he is ready for it. Unfortunately, I do not know much about how he is doing, :(
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One limitation you might face is that with renal disease, high protein diets may be poorly tolerated. But a second opinion from a nutritionist or geriatric specialist might set your mind at ease, even if they also conclude that maybe it is time to turn to whatever makes her the most comfortable and able to enjoy the time she has left. Sometimes you do just start running into the proverbial rock and hard place situation where something you'd like to do to treat one problem will make another problem much worse and can't be tolerated. But there are more advanced treatments for RA and diabetes and CHF that she might already be on, or maybe something new could be tried. Some docs keep up on this stuff better than others, I've found. And some of the things we tried for my mom helped a lot at least for a while, others not so much, but I had to do some prodding to get things tried, there was a real tendency to settle for the status quo and not rock the boat, even though the boat was sinking...
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I want to add that protein supplements helped her in the past, and that is one of the main causes of low albumin is low protein. She has kidney disease also, which can also contribute to that, and does not have liver problems that I am aware of.
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